Help needed for Ciclosporin

Hello Holly,

I am currently on Ciclosporin, started my course 5 weeks ago and currently my skin is completely clear from plaques, scales and redness. It's like living a new life again!

Currently I haven't experienced any side effects but this may be due to early days on the medication.

I do have a hospital check up in 8 weeks with the first 4 weeks having a blood test and blood pressure test weekly, then for the 2nd month fortnightly. I'm not sure what happens after the second month at the moment but will keep you informed.

I think the best thing to do is try it and if you don't work well on it there is always another medication the hospital can look in to trying with you!

Good luck.

Hello eq!

Thank you so much for your response it's so good to hear your treatment is working so well and symptom free. I just can't imagine being psoriasis free so can completely imagine when it happens it's like having a new life again. I'm so excited to try this I just hope I have as good an outcome as you.

That's really interesting to hear about the appointment side too as I had no idea how often this would be. Would really appreciate any more info for the months ahead as and when it happens :)

Could I ask when you were offered ciclosporin how long was it till you took your first dose from accepting the treatment? Can you tell I'm eager to get started he he

Thanks again :)

I am just about to start on Cyclosporin and am greatly encouraged by your post!

I have had Psoriasis for nearly 40 years and it is now the worst it has ever been.

It has just ruined a two week cruise in the Caribbean!

I will report back on this thread when I start my treatment.

Hi Roland would be great to see how you get on! Could I ask what happens from agreeing to taking this medication to actually taking it? Do you have to go for tests first or do you just start to asking this straight away then go for tests? Also how long is it till you can start taking the medication from agreeing to taking this treatment?

Many thanks

I was seen at the hospital at the start of January and was prescribed the medication whilst I was there so I decided to pick it up from the hospital pharmacy before leaving.

Unfortunately I have a phobia of swallowing tablets and they were just a little too big for me to take, I phoned the hospital immediately and they sent a prescription the same day to my home address and started the Solution version within just over a week! Thankfully they were really helpful and understanding.

Before leaving with the prescription they only took a blood pressure test from me as I had already been having my bloods done in the last month from coming off previous medication and having problems with that so they might do a blood test as well but don't quote me on that!

Any more info just ask and I'll help where I can, other than that I hope you both have good results and no side effects and enjoy being P free for a while!!

Started Ciclosporin today!

2 x 100mg capsules per day.

I have to go back in two weeks for a reviewand have a blood test before I go.

I will report back on this post how I get on.

Two days in and no side effects yet nor improvement!

How long is it before you notice side effects or improvement?

I finished taking Acetretin about two weeks ago and have noticed a lot more scalyness so at least it seems to have been keeping that in check.

Hi Roland glad to hear your not having side affects so far! Iv got my dermatology appointment next week and hoping to be put on this then. Will be interested to know the answer of your question about when side affects start if they are too. Did you have to have any tests or anything before starting on cyclosporin? I'm hoping that I can start taking this on wednesday if they give this to me my skin is so bad now.

I had to have a blood test before starting the medication and will have another in two weeks before my review. If everything is OK it will then be a month before another blood test and review after that I don't know.

Ah that's good to know did you have the blood test the same day as your appointment and how long after your test was you given the medication?

I had the blood test about four days before my appointment with the dermatologist.

Three and a half days in to my treatment and I think I am seeing my first side effects!

It is difficult to describe but the best way to describe it would be that my fingers feel like I have been out in the cold for too long.

No improvement in the Psoriasis yet!

Hi Roland/Holly

Tingling fingers was a common side effect with me, I loved ciclosporin because it cleared me within about 4-6 weeks, it was the first time in about 20 years that I had been clear (used it twice) but had to stop both times because of raised blood pressure. Currently on Otezla (apremilast) which started well but stopped working after about 6 months now been given ok to use secukinumab, we'll see how that goes. Good luck to both of you, Daniel

Hope your getting on ok Roland how are your fingers? My appointment is with the dermatologist tomorrow! Two years ago I was offered ciclosporin but didn't take it as I wasn't that bad, so I will be asking if I can go on this as I'm really bad now.. I just really hope they let me go on this and I get to take it soon I'm so fed up with my psoriasis would just love a break from it. Feeling a bit anxious about my appointment now

I'm absolutely gutted, getting ready for my appointment and I get a call to say there is no clinic today I'm so upset! They are looking to get me an appointment soon but I was desperate for today's appointment :(

I started cyclosporine 3 - 4 weeks ago, I can see a small improvements in some of my affected areas but nothing in others, side effects for me so far have been rough, headaches, stomach aches, cold burning fingers, dizziness and losing focus on things easily. I want to continue on the meds though as methotrexate calmed it down but never cleared it really. Going to the dermy today to see how my bloods and blood pressure are looking.

Ten days now and only occasional tingling in the fingers,

I noticed something strange yesterday, not sure if it is related to the treatment.

One of my fingers kept getting stuck at an angle, no pain just couldn't move it without pushing it back into place then it was OK.

I think it was muscle related not joint but don't know, very odd!

Been taking Ciclosporin for two weeks now and am starting to see a slight improvement with a reduction of the redness.

Side effects are limited to the occasional tingling of the fingers.

I had a blood test on Friday and a review with the Dermatologist on Wednesday.

So far so good!

Hi Roland,

Sounds like it's going well for you! My appointment got re arranged for this Tuesday i can't wait for it now! Glad to hear your having an improvement already! Do you still have scaling and itching?

Thank you for your posts good to hear how you are getting on :)

Do you have to stop taking creams like dovobet , silkis etc? When on ciclosporin?

So I had my appointment today and the dermatologist has advised I go on ciclosporin, I'm so happy they have agreed, I'm having blood tests this week and got my next appointment Tuesday. Hopefully I can start the treatment next week :) how is everyone doing?

Holly1 I am still using Dovobet with the Ciclosporin.

Been for my two weekly review and my cholesterol and potassium are high but I have been given another four weeks medication.

Thank you Roland that's good to know I can still potentially take dovobet to. Glad your still able to continue for another 4 weeks! How are your side affects? And how is your psoriasis clearing up?

So I've currently been on Ciclosporin for around 2 months now and I too get the tingly fingers now and again, more likely when it's cold!

There has been a good improvement to my face and ears, little improvement to my scalp as I still have small plaques around my head and minor improvements to my elbows and knees. At the moment I'm not very impressed with it as it doesn't appear to be clearing up anymore but got my derm appointment in 2 weeks so going to discuss with them when I go!

I was given ciclosporin today and took my first dose this evening. I'm on 100mg x2 per day, my next appointment is in 5 weeks for more blood tests and I have to have my blood pressure checked twice per week. Was thinking of buying a blood pressure machine and taking my own readings, does anyone do this and have recommendations for a machine?

Eq that's a shame it's not working out as you hoped! Hopefully at your next appointment they can do something and give you the results you want. Keep us posted on how you get on

Three weeks in and still no obvious side effects, some patches seem to be clearing but new patches are still appearing so no net gain apart from the redness/purple has faded a bit.

Glad you don't have an side affects Roland!! Shame your getting new patches. How long till your next appointment?

I'm two days in and so far just tingly fingers and sometimes if I put my hand in Luke warm water it feels boiling. I'm also using although not every daily diprosilic (not sure on spelling, been on this for a week) so far the scaling seems to have disappeared and isn't coming back yet, the redness isn't looking sore just a paler version. But tonight iv noticed that this is the first time iv had a shower where I haven't been in pain after so I'm happy with that. Love hearing how your all getting on!

Hi how is everyone doing? So two weeks in my psoriasis doesn't look angry anymore but it's still noticeable, some patches are fading but not enough just yet. It started off quite quickly with noticing a change but it has slowed down quite a bit, not getting worse but maintaining. Does anyone know if this is normal and whether it will continue to improve?

Side affects only seem to be tingly fingers and toes and sometimes water feels like it's boiling hot when it's Luke warm. Other than that I haven't noticed any other side affects.

Six weeks in and no real side effects but no real improvement either!

My skin is not as red or itchy but the psoriasis is still spreading, onto the backs of my hands now!

Dermatologist is happy that my psoriasis is beginning to clear and has given me another months supply of ciclosporin.

He has also taken me of Dovobet and prescribed a new moisturiser called Cetraban, anyone used it?

Hi there I am just about to start using ciclosporin. Bit nervous about it but having read your comments etc it sounds like its worth trying. My psoriasis has been getting worse and worse and is now just so sore and itchy its unbearable. It's everywhere with new patches appearing all the time. I wanted to try light treatment again but dermatologist thinks this would be better to try. Just waiting to see specialist nurse and do initial blood test then I will start it.

Not sure what else to do as have tried so many different creams and lotions and steroids but nothing really helps. I wash with Zerobase and use Zerogel as a moisturiser and use Capsal for my scalp and Betnovate sometimes too but I just hate the comments the dermatologist makes like moisturise 4-5 times a day!!! It's just not possible!!

Anyway just wanted to say hi on this post has its all about what I am about to start so your comments are really useful. Thank you

Hi all,

I have just come off cyclosporine. I was on it for a year. This was amazing for me. I had the worst flare up I have ever had. I was 80% covered. Within 2 weeks, the psoriasis was clear, left faded red patches, after 3 month they faded.

When I was first on this I had weekly blood test for first month, then went every 2 week. Once I reach 6 months it went monthly. All appointments with the dermatologist was every 8 weeks.

Only side effects were the cold burning sensation in my fingers and toe when there was a change in temperature, this was most noticeable during bath/showers. After 2 minutes it went back to normal. Warming them gradually help.

I am now starting methotrexate, progress is not as good as cyclosporine, and side effects and nice either but I'm hopeful as I adjust to this medication.

Hope you find cyclosporine as good as I did.

Hello Kirsty,

I was on Methotrexate before Ciclosporin and it had completely cleared my skin within 1 month, I was about 80% covered from head to toe and was so happy with this treatment. Hopefully, it will start to show improvements soon!

I've been on Ciclosporin for 3-4 months now and most of my body has cleared up except for a few patches in my scalp and my elbows have not budged at all. I'm not overly impressed with Ciclosporin as Methotrexate, especially as the dermatologist said I would be clear within 2 weeks. I'm still very happy that most of my psoriasis has cleared up and can finally enjoy things that I had to stop doing.

Hope progress for everyone else here has been good!

Just starting taking cyclosporine and my first dose of 250mg (1x100mg and 1x150mg) twice a day is killing me!.

I literally feel like I'm going to puke, and have terrible indigestion.

Hope everyone is doing well on cyclosporine.

Was just wondering, my friend just informed me that her son has chicken pox who I was with a few days ago. I had chicken pox as a child. Does anyone know if using ciclosporin you can catch chicken pox even though you have had it?

Hi. I was diagnosed with erythrodermic psoriasis after a lot of dr visits and pain. I've never had psoriasis until 6 months ago and it spread so quick. I was covered EVERYWHERE apart from my face.

I've been on ciclosporin(neoral 100mg twice a day) for 2 weeks and there is definite improvement but I'm still quite red/purple especially on my legs.

I was wondering how long it took for this to go away? And also did you experience hair loss as mine is falling out loads! But I read 79% of females do experience hair loss and it's mainly in the first month.

I haven't came across anyone else with erythrodermic psoriasis and so it's been difficult to find out information.

Welcome to a very exclusive club. My doctor told me that about 3% of the population have Psorasis, and about 1 in 300 of that figure will get Erythroderma. . Mine kicked off December 2016, though I've had P since I was a child, it never really been a problem before. 2 weeks is not very long, It took the best part of a month before mine started to improve, though when it did kick in the improvement was dramatic.. The side effects can be wearisome (That is very bowlderised!) but I would say stick with it it is worth it. I'm now starting to come of the stuff, That takes almost as long. The important thing is that is to accept that there is no miracle cure. It's easy to get impatient, and the majority of people do not realise how debilitating it can be. Your body is currently at war with itself., eat well and drink plenty. It will improve.

Thank you for the reply.

I've been trying to stay positive and it's improving everyday only I'm still very itchy. When does the itching stop? Whenever I scratch it come up red and spotty.

I found two things that helped with itchyness, one was the 50/50 paraffin ointment,, though if it rains you leave an oil slick behind. The other is one of those 'Gipsy' remedies. Get some cheap porridge oats, cheapest you can as they are least refined. Put a couple of generous handfuls into a pice of white cloth or an old flannel and put into the bath water . When you squeeze the cloth a creamy liquid will appear, just rub in on and soack. I never use soap but always a baby wash, again supermarket 's own works OK. Shampoo is similar, most shampoos are far more concentrated than you need anyway. Get a cheap shampoo and dilute it 4 to 1 before use, then buy a bottle of Tea Tree oil and ad a couple of drops to every litre of the diluted shampoo and use that. Cleans hair perfectly well, and saves money. By the time of your post, I'd guess your sleep patterns are all over the place. That I'm afraid can also happen, and is probably one of the most dibiatating things..

One problem is to get people to take the matter seriously, even I who have had P all my life was cavalier until the Company Doctor said quite bluntly 'You know you can die of this'? That brought me and my employers up very short. The Cyclosporin will need a month to 6 weeks to really kick in, but it is worth it the end. These are the bad parts, but the positive is it will better. Follow the Dermatologists advice,but you do have the right to feel fed up and frustrated. Don't apologise for it.

Anyone had a cold while on ciclosporin? I've only been taking it a week but caught a cold and really suffering?

Actual cold or sore throat? The throat seems to be a constant I'm afraid. If it is a sneezing type cold, see your Doctor. You may need propohlactic antibiotics/

Both. Thanks for the advice I will book an appointment tomorrow

If you have any trouble swallowing, the advice I was given was straight to A&E and inform them your on Cyclosporin which is a low rate refferal IE Strightaway seen.

Dodgewc51 that's good to know about going a&e for that I didn't know. I have had a few colds and sore throat on and off but didn't seem worse than I have had before so I let it ride it's course pharmasist said to take paracetamol which helped a tad but I was ok. Hope you feel better soon!

Pleasure, we an exclusive club you know! Got to help and advise each other :-)

Thanks for the advice. Are there anymore useful tips for looking aftet myself anybody can share?

Drink plenty, it can make you feel de hydrated, and it helps the kidneys as well . One oddity that caught me during the recent exceptionally hot weather, the side effects of Cyclosporin, the tingling in lips and fingers and the odd muscle ache, can mimic signs of a heart attack, I ended up in Guys overnight being monitored, no problems in the end, but not a good way to spend the evening. Use a baby wash , rather than soap, and add a bath foam, I use the cheap Tesco's stuff works fine. Avoid Bio washing detergents. Cyclosporin is not something dished out willy nilly, and the effects can make you feel is it worth it at times. Yes it is! May take a month or so before you see effects, but it does work. New treatments are coming along all the time, I've been offered an injected treatment once a month , so we'll see if that works.

Thank you for the useful tips and I hope the injections work well for you.

One week into my course of Ciclosporin and for the last couple of days have been extremely itchy after a shower. Is this normal?

One week in the stuff should be starting to have an effect. It is a long term treatment, that's the drawback. One thing the skin does do, which most don't appreciate, is help control body tempreture. I spent most of the winter bloody freezing and the early part of the summer (Ha!) boiling, just can't win. Your skin will be sensitive for a couple of weeks, bear in mind your body is fighting itself at the moment so all sorts of weird things can happen. Try using a baby type wash, never soap, that's bad for skin anyway. As soon as you have showered slap on an emolient, I was given 50/50 paraffin that will sooth it down. As you settle into the routine it will improve. Have you started noticing tingling lips yet? That's quite common, especially with hot drinks. Keep with it , it is worth it. I've had Psorasis alll my life, my Mother had so no big deal, just is. Till after 59 years and 8 months, Erythrodermia, and a very nice Doctor saying 'You know you can die of this? ***********!!

Take the condition seriously. I'm not being a gloom and doom merchant, but one problem is convincing others, yes you are ill, seriously.

I've been getting tingling in my fingers, especially when I lie down. I have got Dermol 500 which I have been using as a soap but I can also use it to mousturise so will start slapping it on when I get out of the shower. I have read on the internet that it can be life threatening. I have psoriasis in all the high impact areas, the worst of which being ALL of my backside area, and have spent the last few years in quite a bit of pain so am willing to go through any and all side effects to get this cleared up.

At least you know you're not alone. Try some of the 50/50 parrafin if you can get hold of it. Horrible stuff gloppy and get everywhere but it's effective. One drawback, the only medicine I know that comes with a Stay away from naked flame' warning. so no toasting the bum by an open fire. :-) I found ordinary cheap Tesco baby wash/shampoo was the best stuff to use, The water where I live is so hard you can eat it so not the best to wash in anyway. I ended up looking like a bright red Michieln Man, and was walking about laying trails of white dust behind me, embarrasing and unpleasent. I found the side effects more annoying than anything else. Give it another week or two and things should stabilise. Do drink plenty, keep the kidneys well flushed, that is important.

Thank you for the advice

Any time mate.

Starting Ciclosporin today..have high hopes from all the reviews. The results reported of total clear up of skin is great news

Don't expect overnight results. Give it three of four weeks and you will amazed.

Thanks! Have you been on this drug long?

Just coming of it actually. Started last December , that was with 100% Erythroderma. , so by the time I finish it will be about 10 months. The dosage is worked according to your weight, so everyone is different. The dose will build up but then needs to be slowly brought down till you reach a maintience dose or change treatment. Worth keeping a note with you of the drugs your on and the dosage in case of emergency. Timing of dose is important in the first few weeks at least, Just follow medical advice.

Thanks for your advise. I will post soon. My derm told me that you can go onto the vitamin a drug (acer somthing)as a bridge whilst reducing ciclosporin dose.

Not heard that one, Folic Acid is used to reduce side effects of Matraxine, though I want to avoid that. Treatments are improving all the time. I've been discussing an injected treatment with my dermatologist , but that is very new so we'll see. There is advice and support here, or if you just want a good moan, believe me at sometime you will :-)

For what??

Annegrey: For 59 years Psoriasis was nothing more than a nusiance. Then I was warned I could of die of a complication Erytrodermia. What food could cure that? Cyclosporin is a very powerful drug, no reputable Dermatologist would perscribe it unless the patient needed it.

Unfortunately I don't believe foods can cure my condition! And my dermatologist is very good at what he does! Different drugs affect different people in different ways. I have read about what foods I can and can't eat but I'm sorry I like the foods I eat. You stick to your ways and leave this forum to deal with theirs.

Giacy, yes if it was that easy none of would here.

Last few days I have had a cold last night I felt so rough pounding headache felt achey, lost my voice and throats hurts this morning I feel ever so slightly better the headache isn't as severe and I'm not as achey but symptoms are still there and throat still hurts. Should I be worried having these symptoms whilst on cyclosporin?

I asked my doctor for a throat gargle, that helped. If you don't want to go to the doctor, then Liquid TCP, diluted as per instructions, tastes foul but doe sooth the throat. If you have trouble swallowing then go straight to the doctor ofr AE and tell them what you are on.

Clearskinpls I hope using cyclosporine gives you the results you want. From my experience I am so impressed I never thought I would have clear skin again I got to the point where I was so fed up and depressed over the state of my skin and the pain I was in with it. Was dubious about taking the drugs as I heard about some side affects but I'm so glad I did it been on these since end of march and it does take a good few weeks to notice a few changes but I'm 99% clear now!! Il be coming off these next month and by then it should be completely gone. It has totally changed my life sounds extreme to say but it really has! This forum has been fantastic with answering my questions and just hearing from people in the same situation is so helpful. Good luck :)

When you come off it will flare, but at least for me the return is at a level I can live with quite happily. It will be a couple of months before any follow up is decided, so I'm at decsion time. Do I continue with another treatment, or return to the staus quo, where I have some plaques but not enough to worry.

Thank you for that thats interesting but like you say hopefully it will be at a manageable level that I can try to controll. It's so nice having clear skin though so I can understand that decision being hard.

Thank you for the advice with the sore throats I will buy this. So far I'm able to swollow fine but if that changes I will go a&e appreciate your help :)

That's what the forum is for :-)

One week in with Ciclosporin and good results. .skin is beginning to fade and any white scaly stuff is gone so no more skin trails. Dodge's recommendation of Baby Lotion is a great tip . Its easy non greasy and smells great....I smell like a fifty year old baby but im cool with that.

As for side affects occasional cold feet whilst sleeping...so , so far so good...I think feeding your body with good healthy food helps the body with Ciclosporin's change affect on body

Great news.

Can I ask you how its going with you? Now your off ciclosporin or coming off it what are your next options? You said your results have greatly improved

Some scale coming back at the base of the spine, otherwise, nothing visible. . Though I am, a bit fed up. The Erythrodermia was bad enough that I've been off work about 6 months over the year, and every time I was it's poured down with rain ! Good news, changed job to something I enjoy and a lot less stress, so that probably has helped. On full dose the skin was totally clear, that gives the time to allow the body to heal, so now coming off my skin seems to be back in equilibrium. With how it is now there are no practical problem so I hope to go to back to , I don't bother it, it don't bother me. Though for me Psorasis has been there since childhood at some level, so I'm used to it. I have to say at my last job I had a very good manager, who supported me through the whole episode. That helped a lot.

That sounds positive and practical

We all know that it can creep back but I agree a work balance helps..I too have had to reduce my working pattern. And work stress is definitely a factor. Im glad you have found a more enjoyable vocation. If you can avoid any itching and scratching that inflames the skin. You may keep it at bay....so good luck!

Touch wood, no itching ! This whole episode did make me think and re-evaluate things, as the old saying goes,'No pockets in a shroud'. The important thing is get it back under control

I've always been careful about things like, what material clothing has been made of, what detergents I use to wash them, and things like soaps etc. Though clothing wise that's mostly because I worked outside with horses, and agriculture so looked for kit that would protect me in all conditions, never Denim by the way, horrible stuff, hard, heavy when wet retains no heat when wet, difficult to dry, but that's personal. Best things I've found for next to the skin, pure soft cotton, silk, very effective but expensive and Pure Merino , note must be Merino, wool. Again expensive, but hard wearing easy to clean and long lasting so worth it in the end. The unique part about Merino wool AKA The Golden Fleece' is that the staple, which is the fineness of each thread, is smaller than 30 microns, so actually fits bettween the nerves of the skin, and you don't feel it.

Your tips and advice are very appreciated I think your right ; clothing on skin is a big factor ..have you found an ideal non bio for clothes? I use non bio, but as with your clothes idea , any material especially what it is washed with is definitely a consideration

For anything that is delicate or expensive I tend to Favour a company call Nikwax. they do a range of cleaners and treatments for outdoor kit. For standard laundry, Liquids, less residue than powders, which can cause irritation, non bio. Fairy Non bio is my usual standby. Another oddity, bio detergents tend to upset the eco systems of sewage treatment plants. If you live in the wilds with a septic tank or small scale treatment unit not a good idea.

There is a little nemonic for clothing To stay comfortable think COLD, Clean, Overdressing to be avoided, you sweat, Loose and Dry. As for feet., especially coming into the Autumn and winter , invest in a pair of Sealskinz or similar Gortex or Sympatec breathable socks. They work well in summer to as your feet sweat, the vapour can pass through the EPTFE breathable layer, but when it condense to water the drops are to big to get back, so feet always dry and comfortable. In winter thye are totally waterproof from outside, so your feet stay warm and dry. Wicking type materials also work well, but will allow water back. The Gortex are very good if you wear wellies as if your feet sweat the water stays inside and will get cold so your feet freeze. A Scottish friend of mine did once suggest I try the traditional Scot's answer to cold wellies. Stuff boots with fresh cow muck and straw. I declined graciously.

Ha ha! Im sure your Scots friend had your best wishes at heart...dont discount his idea ; old remedies are sometimes the best ! Psoriasis has been around for forever

Muck does have it's uses. Another old country treatment for skin complaints is to take crushed oats, put in a muslin cloth and wet in hot water, when you squeeze the muslin you get a white milky liquid, very rich in soluble Vitamin E, soothes skin wonderfully. Now sold in a flash bottle at scary prices advertised by a super model. I use the cheap supermarket porridge oats. Also a dry handful with a drop of liquid soap will take off dirt , oils and paints from the hands as well as the chemicals such as Swarfega. A drop of Tea Tree oil about £2 a bottle, lasts for a lot of treatments, in a 1 litre bottle of cheap shampoo diluted down to 25% , you get an expensive shampoo.

Yes tea tree is a good tip, oats and muslin I think I would probably get half on me and the other half all over the bathroom! Ive been taking tumeric, lots of positive benefits. .I think it did calm my psoriasis down a bit ...also as lots of spinach, all helps the body

Dump the muslin and oats in the bath, works the same way. Food wise Seaweed extract has a lot of good properties, and can now be bought for human consumption. mainly for Iodine and other trace elements. Though like all these things be careful, over dose can be harmful.

There is a lot more solid scientific research into feeding animals than humans, but then you need to know your input into a production system ie farm animal so you can make the best profit. I'm not a cynic (Honestly!) just so many health food/supplement adverts make me laugh. High in Protein! What type? Soluble or non soluble, 90% less fat, compared to what? See my thinking? :-)

Hi All, took my first dose of Ciclosporin today. Curious to know did anyone experience any side effects such as increased body hair (more so for the women) or increased growth of the gums?

Hi Marylou. I consulted my dentist when I first started taking it, he told me it would be years of taking it before he would expect to see an effect. Why not check with your own Dentist, they won't mind, in fact they need to know if you have any treatment. ? Hair, I never noted any difference, but I'm male. Main things are tingiling, lips, , fingers and toes., and a sore throat. Ask your Doctor for a throat gargle, or Dequidin lozenges will soothe nicely. Just follow the Dermitologist advice. You may well feel a bit knocked about to start with, but it is worth it. Plenty of help and support here

Thanks DodgeWC51. I'm due a check up with my Dentist next month so I will be sure to mention it then. I was just curious as this is the first oral treatment I've tried, up until now it's always been creams.

Marylou I am having excess hair growth on my chin. Nightmare! Having to pluck my chin daily 😩

I have also been really suferring with aching joints particularly knees and ankles and now my back and unfortunately planter fascititus has flared up too in my feet 😩

That said my skin is looking amazing and almost 6 weeks in I am very impressed. Is a relief to not have many skin symptoms anymore 😊👍

Seeing consultant at end Aug and am nervous about stoping ciclosporin as just dont want it to come back.

I still have marks on skin but very faded now and no scaling and very infrequent itching so really pleased. Apart from the muscle pain and joint pain.

Blaynster: Good news and bad news I'm afraid. The scales will come back when you stop taking the Cyclosporin. Though mine is not as bad as it was, so for me is livable with, plus the other side effects disappear! I can taste things again and if I have a hot drink, it dosen't feel like a mouthful of fizz. Good news: There are new treatments all the time, my dermitologist is suggesting an injected treatment, which reduces side effects considerable, and is less disruptive of life in general.

I'll discuss it further with her in October and let everyone know. But one helpful thing she said to me 'You don't have to live covered in it. Everyone is different in there levels of tolerance and the effectiveness of treatments. There's one out there that will work for you.

Thanks DodgeWC51 useful to know. I suppose I am just dreading it coming back as bad as it did before.

Saying that I have a phototherapy lamp now which I will be able to use once I have stopped the drug so hoping that will help keep the psoriasis you can see at bay :-)

Consultant next week so will see what she says

Been about ten days since I stopped taking Cyclosporin. There is some return of flakes and a bit of redness,around the lower back and a bit on the ankles. I was warned that would happen, the immune system getting back on track. It's now a balancing act , no drug is completly harmless, if it was it wouldn't work. They do after all change how your body works. The good side is I can now taste things again , no odd tingles or aches. The Cyclosporin did what it had to do, which was treat a pontentially fatal condition. Now just the normal, things I was doing before is keeping it easily managable. so I'm happy at the moment. See what happens over the next couple of weeks, if it dies down again great, if not then when I see the Doctor in October I'll discuss further treatment. The UV treatment that hospitals provide is a lot different to any commercialy available product, and of course UV has it's own risk. I come from Jersey, which argues it is the melanoma capital of the world, yes, I know New Zealand claims that , but there are less of us, it's a lot smaller rock. Anyway, even as primary school kids we were taught about avoiding sun burn and covering up , so be careful. A little may well help, but avoid overcooking.

I'm coming off my tablets in one months time and I'm dreading Its nice to hear how your getting on being ciclosporin free dodgewc51..

Blaynster im sure you may know but just in case you haven't been told. My dermatologist told me that although your immune system comes back quite quickly the skin takes a little longer so she said to make sure I use factor 50 on my holiday as my skin will still be sensitive to the sun. She didn't say how long it takes, so maybe worth asking how long before you use your lamp :)

Thanks DodgeWC51 and Holly1. Good to know from people going through it all at the same sort of time, what to expect.

I have done UV treatment at hospital so know all about the risks associated with it and plan to be very careful. My skin is fair so I can only do seconds initially anyway. If it helps me manage it then great.

It is a proper uv lamp with narrowband UVB bulbs so the same as a hospital. Totally take on board what you say though so thank you.

I may have another 6 weeks On cyclosporine so will see how it goes. The joint and muscle pain is pretty uncomfortable though. See what the consultant says next week.

Thanks guys

So now been on ciclosporin for 4 weeks. Results are impressive. ...99% faded away.

Side effects: some muscle pain but shorterm. Some Gum growth so i do lots of flossing to keep that at bay.it works for me.

As Dodge suggested baby lotion to keep the skin supple...im not a doctor but if you don't scratch , the skin responds by not getting red and no outbreaks.

I think this treatment is excellent but when i come off the treatment ....it may or may not creep back....who knows. ..fingers crossed..

good luck all

Great feeling isn't it? Best wishes. :-)

Im glad your results are positive since coming of ciclosporin recently Dodge.

Im unsure of Uvb; overcooking in my opinion makes my condition worse. Whats your next course of action?

Hi ClearskinPls I definitely don't plan on overcooking at all!! I burn very easily and always have done. I have always used a high factor skin protection when in the sun and tend to sit in the shade more than the sun itself. Its too hot for me.

The UVB therapy has helped in the past control my psoriasis so thats why I have invested in my own lamp so I don't have to go to the hospital for 30 seconds treatment 3 times a week. I can do it at home now.

I will of course be taking as much advice as I can from my dermatologist and the company I purchased the lamp from have a helpline too as they are specialists in supplying UVB lamps for chronic skin conditions.

I don't know when I can use the lamp yet but will be very careful. Its all about finding what works for you best and everyone is different. So pleased to hear yours has also faded and cleared a lot.

My arms are the best but my legs are not great though there are no plaques just a lot of scarring still. If thats the best I can expect them great at least I am not leaving a skin trail wherever I go anymore!!!

Hi Blaynster...its a silly question ..I apologise in advance....are the lamps definitely hall marked by Phillips ..its important. Also keep out of natural sun if your using lamps

Yes 100%. They are Phillips 100w/TL01 UVB Medical Narrowband tubes.

The company is called Much Better Skin and are leaders in narrowband technologies.

Full researched and investigated to make sure correct.

I don't sit in the sun anyway so would no issue :-)

I will only be using it 3 times a week the same as if I was at the hospital having treatment but I will have the convenience of doing it at home.

It would not allow you to do more than 5 minutes max anyway but I only ever got up to about 3 minutes at the hospital after 4 months so...........

Don't worry I will be careful :-)

Thanks for the concern

Blaynster: There is now clothing available that has specific UV protection rating. Mostly from outdoor shops as it is used by climbers due to UV effects at altitude and those working in tropical climates. reduces the need to keep topping up with creams.

Thats great...so much better than going to the hospital. ....ive done uvb 3 times over 8 years and results were good. But I think my skin just doesn't like it anymore so I stopped it in January...but the nurse did say if you uvb its very important to moisturise afterwards. . Good luck!

I was also told don't forget goggles, and being male there are ..certain..- other portions -must be covered during treatment. And who says UV treatment is straight forward? One thing about it in winter though, does give the Seritionin a boost, so should make you much happier, whilst the rest of us are cold and miserable> :-)

Just an update folks. Been off the Cyclosporin for about 6 weeks now. Good and bad. The P as flared up badly. Lots of small red spots , like a bad case of measels. scaling came up , but that now seems to be calming down. So a bit more wait and see. Due to see Dermatologist next month. Getting a bit fed up as it looks like any alterntive treatment will effect life and work . Ho hum, we will see.

Hey D

Im still on Ciclosporin with excellent results for another few weeks...we both talked about it before that once your off it the body gets back to attacking the skin...but maybe the Ciclo has given your body a good chance to stablelise and the P will be less and more manageable?

Are you itching and more importantly are you sctatching ?

rgds T

Dodgewc51 glad it's now calming down for you have you been using anything whilst you have been off cyclosporin? I came off of mine yesterday very nervous as to how my skin is now going to react. My next appointment is November so not too long to wait.

Let us know how you get on at your appointment next month

Hey guys. Not to itchy fortunatley. The old 50/50 paraffin ointment is helping a lotTrouble is as you know, it's impossible to predict from one day to the next how your skin will react. Today is less red but more scale. I've about a month till my next appointment but can call up if the situation goes critical. Currently annoying, but, not life threatening. So the Cyclosporin did as T suggests, let every thing rest and recuperate. So now hopefully will reach equilibrium. Been 10 months since this all started, so no miracle cure.

Not posted an update for a while so thought I would let everyone know how it was going.

I started on Ciclosporin in February just after my psoriasis had spoilt a Caribbean cruise (we visited some of the places we have seen flattened on the telly).

I had been on Methatrexate but that made my P worse, I had also been using Dovobet for years.

I started to see some improvement after about a month and after two months my consultant suggested I stop using Dovobet.

Since then my P has practically cleared!

From about 75% coverage of my arms, legs, buttocks and also large patches on my back and stomach not to mention the genital psoriasis I now only have the odd small patch appear now and then but nothing permanent.

I have been very lucky with the side effects that I can definitely attribute to Ciclosporin with only some tingling in the hands.

Hi Folks, been while since I posted, but. Came of fCyclosporin a couple of months ago, to see if Erythroderma would stabilise. Short answer No. After a week or so from the last dose, bloody hell! It just went crazy. So I saw the Dermitologist a couple of weeks back. Straight back on large dose of Cyclosporin, which has now settled things. I'm a bit fed up as it looks like for the foreseeable future I'll have to take powerful drugs, hoping to go over to Methtraxate for long term in next couple of weeks, Not the outcome I wanted, but the alternative is is unlivable with.

Sorry to hear this dodgewc51! And just after a week as well so frustrating. Glad that it's manage to settle down a bit now though even though it's not the outcome you would have wanted. Out of interest as I wasn't offered methraxate is this better for long term use?

Iv been off ciclosporin for nearly 2 months and it's slowly coming back. I have a few size 5p patches on my shoulders back and a couple on my legs, which is better than I expected. But it's really come back with a vengeance on my scalp and face 😏 Right where it's most visible of course! Need to go pharmacy this week and get the scalp soloution as the shampoo is doing nothing at all. Does anyone know what this is called? It's a bottle that had a nozzle so you could apply a clear solution to your scalp 🤔

Hi Holly, One thing I found did help was the 50/50 paraffin ointment, does mean you go round imatating a candle, but it did keep some of the itch at bay and was very effective when used lightly on my face.. My pharmasisit also recommended Loratatdine, an anti histiamine, one tablet a day, that helped if the itching got really bad. I took it in the evening, it id help me sleep. The dermatologist is going to introduce Methatraxate hopefully in the next couple of weeks now my skin has settled. Her aim to try and get me on Biological Methatraxate. That invloves an injection once a month, but requires a number of pre tests including a TB blood test preceded by oral treatment. Apparently the side effects of biological injections are none, and the incovinence minimal, so that's what I'm hoping for.

Hi, i have took ciclosporine 3 times over the last 7 years, I find it very effective and i have had little side effects. The first time i had eryhtro psoriasis and was hospitalized for several weeks. They gave me ciclo with a dosage of 3.0mg/kg Bdy Weight/ twice daily. This is a pretty low dose from what i gather. I stayed on it for 6 months with no rebound when i came off.

3 years later i had another outbreak and used ciclo with the same dosage for 3 months, this cleared me again with no rebound.

3 years later i had another bad breakout with 90% coverage, at this stage i was in a different country and doctors were wary of putting me on it. i was put back on it starting at low doses for 2 months. The low dose did not give me any relief, they then put me upto the 3.0mg x bdy weight/2 daily. This give me 99% clearance again. I have stayed in this dose for the last two months, i am now in the process of reducing the dose, i am back down to 2.2mg x bdy weight/2 daily with little rebound. I am hoping within the next few weeks to drop back down to 1.0mg x bdy weight/2 daily. I am crossing my fingers that i get the same results as previous experiences.

I've been back on it for 3 weeks now. The diffrence is really life changing. Skin more or less normal, a great relief. Beter stil very litle in the way of side effects, body must be used to it. So next couple of weeks see what the dermitoligist recommends . The ldeal for me sounds like Biological Methatraxate, , the bones and joints are getting a bit weary, so hopefully that will improve as well.

So glad I've found this site I'm currently waiting to see the hospital next week and been talking through treatments with my doctor and I'm asking for ciclosporin I've read loads and spoken to my doctor every month for last year and they agree this may be helpful route to take, did anyone out right ask dermatologist for this or was it suggested by them any help appreciated I've had enough and lost too much hair now completely on show even bold patches not enough hair to hide it anymore,

Welcome in. It isn't an overnight miracle, you'll need a few weeks to see an improvement but it does work. For me it was suggested as what amounted to Emergency treatment.

I'm not expecting an overnight miracle I just wanna take my kids swimming again and not be upset with having to hide my hair, i dont want to have to move my partners hands from my hair cause im scared he will feel it and feel horrible i

don't wanna have to explain to everyone I meet what wrong cause I have large raised scales right at the front of my hair and bald patches of hair I'm a young female and my family don't undestand, I've wasted so much money this year trying things people said worked for them I just want some improvement to at least be able to hide it

You should definietly get an improvement in your scalp. As for the hair, itself, a good hairdresser should be able to advise. The general complexion improves as well Be realistic though, allow a month to six weeks for major improvements, though you should notice a diffrerence after a couple of weeks.

Hi all, newbie to the forum and just wanted to say hello and thanks for all the useful info on this thread. Just about to start ciclosporin for ppp (palmoplantar pustulosis) and feeling a bit nervous again as have just stopped acitretin due to it being ineffective and tried methotrexate in past, also ineffective, and I'm a bit fed up. Crossing everything that this will give me some relief and let me walk again as at moment I'm stumbling about on tiptoes and have very poor quality of life. Thanks again for info. Hope you're all doing OK.

Before going on Ciclosporin I was convinced that I would never be free from Psoriasis after suffering for 40 years.

I am now 99.9% clear (apart from my nails) and have booked a holiday in Cape Verde for January because my dermatologist says I can only stay on it for a year and that runs out in February.

I am dreading coming off Ciclosporin!

Just heard about a woman who's been on it for 18 years! According to her, as long as kidney function is OK, it's negotiable.

I'm now at the end of my 5th week on the maximum dose (for my weight) of Ciclosporin. In the first 3 weeks I didn't notice any changes, but then very rapidly the psoriasis started to disappear, along with the soreness and itching. Around 70% of my skin from neck to ankles was affected prior to this, and was so sore and itchy that I wasn't able to go to work for three months. I'm now back at work, my skin feels fine (although 'spiky' to the touch) and I only feel the need to moisturise once a day rather than four times.

Amazing stuff isn't it? Almost like a magic trick, now you see , now you don't. Glad to here it is working for you. I'm just starting to come on to full dose of Methotrexate this week. I was expecting naseau etc, so far I just feel hungry all the time! Good news is losing weight though.

Argh. A couple of days after my post of 3 December, the 'spikes' covering my back and sides started to form into plaques and get quite sore and uncomfortable again. A bit disheartening as I'm now getting towards the end of week 6 on Ciclosporin...

Bad news. Keep with it, best of luck.

Hi All,

I am new to this forum, I’ve been prescribed Ciclosporin. I haven’t starting taking it yet as I am really concerned about side effects, specifically excessive hair growth!!! Feel like I would be swapping one thing for another. I have recently become a mum & definitely don’t have time to maintain a beard haha!

Gutted as throughout my pregnancy I looked like I did 10 years ago before first onset of psoriasis! Then bam after birth back to big ol flare up!

Any advice or information appreciated...no topically treatments work for me anymore.

Cheers,

E

First congratulations on becoming a Mum. On the matter of side effects, yes, read the list, very daunting! I've been taking it for over a year, then a couple of months back, tried to come off it. Didn't work in a very big way! I'm now on it and just starting Metatraxate, hopefully going on to the Biological Metatraxate, the injection. It isn't an instant cure it will take a month to six weeks to have a real effect. Mostly the side effects are a sore throat , bit of tingling in mouth, sometime muscle cramp. Annoying but not a major problem. Everyone is diffrent so keep close contact with your Dermatologist.

Hi elsa81 i was good through my first pregnancy complete clear skin but my recent pregnancy I flared up so bad didn't use anything as I didn't want to whilst pregnant so as soon as I could I started ciclosporin. I can't say Iv noticed any extra hair growth as this also worried me. I had tingly fingers when tempterature changes but after a month that stopped I also suffered with sore throats but that was about it and it completely cleared me up! Iv been off it for 3 months and I had a few patches to begin with but it's started to get worse again. Next apppintment isn't until march so we'll see. Everyone has different side affects but hopefully you will be ok. Good luck with it and let us know how you get on and congratulations on becoming a mummy ☺️

I find the best way to deal with the sore throat is either to gargale salt water or very dilute TCP liquid.. General winter tip, mittens are better at keeping your hands warm tha gloves anyway, but invest in a pair of thing ski glove silk liners.

gf.me/u/fm972s Please share. I am a single mother. I never knew PPP existed until I was diagnosed. I am so desperate of some advice & help with medical treatment.

Welcome in, first your not alone. Look upon it as an exclusive club, My Mother had Pssorasis all her life, so have I. Treatments now are light years from what was available even ten years ago. No miracle cure I'm afraid, but things can be controlled. Biggest intiail hurdle is the cosmetic effects, there is always some smart alex! But it's their problem not your's, At least here you can moan to people to understand the problems.

Hello 🖐🖐. I am considering starting Ciclosporin. I have tried other meds including Methotrexate, Acetretin and Apremilast all of which made no difference other than side effects. So after reading your posts I am feeling quite hopeful. Have had bloods and chest xray done so just waiting for follow up appoint with Dermatologist probably beginning of next year. I suppose its worth a go anyway. Nothing ventured nothing gained. I look forward to reading more of your helpful posts and I will let you know how it goes.

As you alluded to, the medication is one of the most powerful with a number of possible rare side effects but at the same time works rapidly. Just make sure you get all your lab work done, monitor yourself for side effects if you start to feel sick tell your derm, and always tell another doctor you are on the drug if they try to prescribe you something else because there are a bunch of interactions. Good luck!!!

Hi all, new to this I have had psoriasis on the soles of my feet and palms of my hands for four years now I have had many treatments for this from Methatraxate, puva lights and two courses of Ciclosporin, none have worked my last course of Ciclosporin ended this week I was having really bad experience on it such as feeling like my body had swollen up and stomach pains were very bad. I put up with it for four weeks as my feet are very bad with hacks and finding it very difficult to walk around feeling like I am walking around with broken glass in my shoes, my hands also so sore and again looks like my hands have been sliced with a Stanley knife. I get depressed about this my self esteem is rock bottom.

Sorry to hear that, must be really depressing . As a suggestion try contacting a oompany called Altberg. http://www.altberg.co.uk/ their history is with the British Army, over the years they have developed unequal skills in helping people with injuries and ailments that make walking difficult. No, I 'm not a shareholder, just that I know someone injured badly in line of duty who uses their products, she can now walk freely. As for treatment, have you asked about biologicals? This is an injected form of Methatraxate. I've been told I'm eligible and hope to start it soon.

When does your immune system go back to normal after being on ciclosporin? Been ill since coming off it and my throat is so sore. Just wondering if it took a while or whether it reverts back quite soon

Thanks Claire

DodgeWC51 thanks for your reply I will contact them today and see how I get on I have tried all the usual soft in soals etc nothing takes the pain away but thanks for your help, I had Methatraxate in injection form and again never seamed to have any impact. At my last visit to dermatologist on Wednesday morning they have basically said they have ran out of options so just waiting for a new appointment to see a “super specialist” hope they can help

Pleasure mate. Hope they can come up with something.

Hi everyone,

This is my first post on this page, it's great to see so many people discussing things like this.

I'm rougly two weeks into taking Ciclosporin and as yet no side effects or improvements. My derm was pleased with my blood results, blood pressure etc so i have been upped to 150mg twice per day for the next four weeks.

I'm going away on a family holiday at the end of February so I have that in my sights and hopefully by then there will be an improvement.

Some advice that may be useful for some of you is that I have been going for salt water baths a few times per week using Westlab Dead Sea Salt and it has kept my skin flake free. Hopefully a combination of this and the Ciclosporin will result in me being clear come the end of February!

Thanks

Welcome in. It takes a month or so for results to show, so you should have some improvement by end of February. One important factor! If you're going anywhere the sun shines, invest in some UV protective clothing. Easier than slopping lotions on all the time, especially if your skin is sensitive, which it will be. One common side effect is a permenatly irritated throat. Personaly I've found gargling with diluted Liquid TCP to be the best answer, but ask your doctor for a medicted gargle to take with you , and some throat lozenges. I'd also carry some sort of card stating your on Cyclosporin, and any other medication in case of accident. Not to rain on your parade , but your immune system will be depressed, so it wise to take more than normal precautions for hygine.

Hi All,

Thanks for earlier advice, I’ve been on Ciclosporin now for about 3 weeks.

As noted by others I’ve had some tingly sensations in my hands & have had a sore throat on and off! Feel like I am getting a serious cold now though. Thinking of getting the flu jab!

There has been a marked improvement with my skin, which is awesome. Raised flaky patches are gone, some residual redness there but that is also starting to clear.

Have a derm appointment early next week to check progress.

Get the flu jab, and the Pnuemonia vaccine!

Thanks! Will make a GP appt today!

How one can stop the cyclosporine?

Very slowly! The dose needs to be cut down over a number of weeks. Expect the Pssorias to flare up again. Talk to your dermitologist. I can understand why you want to come off, I didn't want to have to take powerful drugs for the rest of my days. Unfortunatley for me it didn't work though I'm now on Methotrexate, and hope to be on the biological form soon.

Thanks for reply,

i have been suffering from psorisis since 2011. Initially i was taking Methotrexate. but in month of Dec 17 my doctor replace this with cyclosporine along with aprezo tablets. Aprezo tablets have no any significant side effect. So i am planing to stop the cyclosporine and only take aprezo to control the psorisis.

I had a couple of months lowering the Cyclosporin and upping the Methotraxate, which fortunatley apart from the odd bit of itchiness, has had no side effects. Doesen't seem to work quite as well as Cyclosporin, but hopefully it will balnce out. I've had Psorais all my life, my Mother had it as well, never a problem in 59 years till the last couple when it went crazy and I ended up with Erythrodermia.

Hi. I am also a newbie to this forum. I've had PPP for the past 6 years. Have tried everything and the best thing so far has been Cyclosporin. I've been on it for about 16 months at 100mg twice a day. Although now they have reduced it to 100mg once a day as my kidney function started to decrease with each bloods done. I only have one kidney so I can't afford to lose this one. So I now have really sore cracked feet and can't walk far. I have been turned down twice for a biologic drug as apparently the psoriasis wasn't covering my body, despite the fact I couldn't walk! They are now trying to get funding for me to go onto it but not holding my breath. So if I do get to go onto this drug will it work? Is there anyone that is on a biologic drug that could give me any hope.

Hi there.

I have got PPPP on my hands and feet!

Just read this post and you guys are giving me so much hope! I started cyclo yesterday and am on 250mg daily (100 morn, 150 night)

I have been on the PUVA treatment for about 6 months with no effect on my skin at all so they’ve decided to start me on this.

Today I’m feeling a little sicky and dizzy? Is this quite normal?

So glad I found this website so we can all share experiences! It’s made it so much better for me realising I’m not the alone in the world suffering with this awful condition!

This condition has certainly been debilitating me, struggling with work (as I’m on my feet all day) and unable to do basic things like cook a meal or have a shower from the pain in my feet! I’m 25 years old and other treatments have obviously been declined due to being child bearing age (although that is certainly being put on hold until my feet are better!!)

Just glad that I have someone to talk to about this who understands!

Will keep u updated with my progress :)

Welcome in. It does take a while for the body to settle down. Your immune system has been busy working at full stretch and now your hitting it with a brick. Cyclosporin is very powerful, so yes it will make you feel a bit strange, hopefully this will settle down. If you have any doubt, go to your Doctor or contact the dermatologist straight away. You will no doubt have a season ticket at your local phlebotomy clinic. First thing it is not an overnight miracle cure, no sugar coating it can make you feel rough to start with.BUT, big but, and the whole point - it works! In my case, and I had whole body erithroderma, it was a life saver. Keep a careful note of any side effects and stick to dosage times! That is important as the stuff has a 12 hour half life and you need to keep the dose maintained, miss by a couple of hours and you can feel quite sick. I found it better to take after eating something. It may take a month or so to see results but they are dramatic. Drink plenty and don't be afraid to have a good moan here, makes you feel better and we all know what it's like.

I had to take it for about 18 months before weaning off it to Methotrexate. That has worked well for me , but I'm past breeding age, for which the world should be thankful .

Treatment is developing all the time so don't give up hope.

Thank you for the quick response.

I’ve only been in it 24 hours now (yesterday morning being the first time taking the medication) and I don’t know whether it’s possible but the pussy spots I had on my feet have cleared up and my feet are already looking alittle better? Is that possible?

I try and take the tablets at 8am and 8pm and with food for definite but the nausea is awful! I constantly have felt sick all day today and also it’s made me really tired! I had to go for a nap this afternoon and ended up sleeping for 3 hours! Something I never do! Is this quite normal to begin with?

So great to speak to people who have experienced the same. Really gives me abit of HOPE with this condition! :)

I'm afraid so. Initially it did knock my sleep patterns about, Fortunately I wasn't to nauseas,

As you will know the list of side effects is long, and initially frightening, Sounds like it is working though. Don't forget. you are seriously ill. Even if most people don't understand how serious it can be.

Been on cyclo a fair few months, and I’m feeling rough. I’m gonna come off and just put up with the pscoaris

Feel it’s ruined my life I’ve lost my mojo, tired and generally cba with anything. I do hw and look after the children/home etc but in myself I’m lost. Rather have the stares from people looking at me than feeling rough. Getting golds, rundown and lathargic feelings a lot. Tiredness, well , that’s pants! Anyone just come off it just like that? MTX was a no go didn’t work at all! Just wanna feel ‘me’ human again! I’m 43 in a 90 year old woman body!! Xx

Heidi, I know the feeling. I ended up off work for about 6 months and a year I'd rather not go through again. I was given one bit of good advice by a friend though 'What do you expect? Your body is at war with itself. Unfortunatley there isn't currently an instant magic bullet. Don't try to come off straight away that is very bad news, belive me . Talk to your Dermitiologist, though most of them don't actually have to go through the treatment, we do, so I can understand . It took the best part of a year for mine to settle down then mixed Cyclosporin and Methotraxate tablets, now onto Methotraxate tablets alone.. Keep with it, it is worth it in the end. There is a new website Ask For Clear Skin, it's run by a commercial company, so for us that know, it's a bit of a joke but does have some useful links to NICE guidance for treatments.

I’m so sorry your feeling like this too Heidi! I would recommend speaking to your dermatologist to see if there’s anything else u can go on if your not reacting well to it!

I am on day 4 of cyclo. Still feeling really nauseas but the good news is... my feet have already cleared up I’m so surprised!! However I am still in absolute agony with the cracks in my feet and I’m still finding it difficult to walk but all the pussy spots have gone and there actually going pink instead of always being red!

I’m so shocked at how well they look and I’m hoping this isn’t a fluke!

Best wishes to u all!!

Hello hope everyone is doing well! Iv started anoth round of cyclosporine this time it's taking longer to clear and still having a couple of flare ups...

My daughter has just got chicken pox I have already had this as a child but wasn't sure where I'm on this medication whether I should do anything or whether this could affect me in anyway. Does anyone know?

Holly1: I would strongly recomend you contact:

- your GP practice (I can get a same day phone call back to answer questions like these)

- NHS Direct 111 helpline

- your phamacy who dispensed the cyclosporine.

Ah thank you didn't want to sound silly ringing up asking. Just called gp and they will call me back this afternoon. Il update the thread once I know incase it helps anyone else ☺️

Hi Holly, it sounds like a perfectly sensible concern and question to me. I think it is good that you even thought about it.

I would be surprised if there is any significant problem, but it is sensible to ask.

I would definitely rely upon advice from your GP or similar, rather than from strangers on a forum :-)

Even when you read a post along the lines of "I tried xxxx and it cured me completely", you have no idea who is posting or how accurate their post.

Thank you! I make you right with those types of posts as well. Appreciate your help ☺️

I spoke to gp who said that by being on this medication I could catch chicken pox again. However he wasn't sure whether to prescribe me I think anti viral meds to combat the chicken pox in advance or not without seen my latest bloods so just waiting to hear back from the consultant now. But either way DR said to call if I see a spot show as then I would have to take these extra meds as apparently getting chicken pox whilst on ciclosporin can be quite dangerous. So I'm on spot watch now until I hear back from consultant.

Thanks for your help

Holly, I am pleased to hear that your GP was helpful (and responsive). It was definitely a good thing to think about and to ask. Best of luck.

Hey guys, ive just started on ciclosporin today, it’s strange because this morning I had taken my first dose which was one 100mg and a few hours later had a bath and it was like I had frostbite in my toes even though the water was just nice. I’ve read through the majority of the posts here and I can see people have had similar issues. It’s just strange because I had only taken one tablet on my first day it’s not like I’ve been taking it for weeks or anything. Did anyone else experience side effects after the first tablet? I’m really hoping it helps because I’m at my wits end. Sometimes I feel like just taking a sharp knife to it and cutting it off and hope my skin heals back to normal skin. I know that makes me sound crazy but that’s how desperate I am....

No, we have all felt like that at some time. Most people don't appreciate is how much the skin actually does, it is a very long list. When it is not functioniong correctly you can feel, or not feel, all sorts of weird things. A few days ago there was a radio piece about the possibility of using 'Drug that can promote hair Growth and cure baldness!' Before the introduction was over I though Cyclosporin. Correct! Didn't know wether to laugh or cry. For us here it is a life changing treatment.

The effets and side effects are diffrent for everyone and I don't know of any way to predict them. You will notice things, the most annoying thing for me wa sthe tingiling lipa, eevry time I drank a cup of tea , to which I'm addictaed, it felt like a fizzy drink. The upside was after a couplke of months my skin was clear. I have now moved to Methotrexate, whic for me is working so far.

Hi Scottish girl I had the same thing and sometimes still do. The other day I was so cold I thought il have a warm shower it hurt so bad where it felt like my hand and feet had boiling water poured on them my partner felt the water and said it's hardly warm! I find if I'm hot or cold and go to the other extreme quite quickly this happens.

That doesn't make you sound crazy at all Iv had times like this or where I can't even face the day because of it but for me ciclosporin has helped so much! Last time cleared completely with a few weeks this time Iv had it for 8 weeks and still have some but fingers crossed it completely goes soon, either way I'm notlonger in pain and it has cleared up loads which is a vast improvement. All the best and hope you see results soon!

Hey holly, sorry I would have replied sooner but it wouldn’t let me, was saying due to spam new users are only allowed to post a couple of times a day or something! Wow! lol. Anyway, I get what you mean about feeling like boiling water is being poured on you. I had a bath last night and my toes went really white and it felt like frostbite or something but it was ok today when I had a shower. That’s great ciclosporin has helped you. I’ve just had my fourth tablet so far and no improvement yet but I’ll be patient! Something strange happened last night while in bed though. I was feeling really agitated and scared and I felt like i was hallucinating seeing someone standing at my room door then seeing a pair of eyes on the wardrobe door staring at me. Also lots of blue, white and red lights flashing. The least bit of noice I was grabbing onto my partners arm. I was feeling really hot but was too scared to take the covers off. It’s just so strange because I had only taken 2 tablets yesterday and this is the affect it’s having on me already! What’s it gonna be like at the end of 6 weeks! Did you have anything like that?

Hi Scottish girl sorry I never replied iv not logged on in while....how are you getting on? Can say I have hallucinations that sounds a bit scared hope they have now stopped for you!

Hi everyone hope you are all doing well! I’m still on ciclosporin but it now seems to have stopped working 😔 so dissapointed I have an appointment in two weeks so will see what they say, did anyone have this? If so what did they do? Also for those that ciclosporine didn’t work for them what was the next treatment you tried? Just want to look up my options before my next appointment thanks

Good to read all of your experiences of ciclosporine. I used for a year, from July 2017 to July 2018 and within weeks my skin was clear and stayed clear! It was literally life changing!

However, as soon as I came off it my psoriasis started to return!

Now it's worse than ever, all over my face, arms, legs etc. I'm starting a biological drug next week called Stelara. I'll let you guys know how I get on!

Hello, so I've been taking Ciclosporin for 2 weeks now and my skin is almost clear which is amazing but I've had terrible side effects I get a headache everyday I constantly feel sick and have the worst pains in my tummy and I've started getting the tingling in my fingers. Anyone else been this bad??

Yes it’s known side effects. As soon as I’d stopped, I’d get a flare up in other places I never had before!! Originally, I went to dermatologist from my GP as the treatments gp gave didn’t work, at that time I only had on elbows and knees but always so angry red. Then I was given Ciclosporin, the MTX , so wish never started it. Guess maybe my conupance for vanity. But now as it’s spread and now I’more anxious and embarrassed, I’m trying UV theprapy the narrowband one which Is very low risk of risk cancer. Hoping starts to work ....I go 3 times a week.

Hi - I am new to the site - but not new to psoriasis - had it since my teens and am now in my 40s. 4 weeks ago I started ciclosporin and have had similar experiences to some of you - mainly the sensitivity to hot water. The redness has gone down but my plaques are yet to show signs of improvement, which is a drag as the doc suggested an improvement would be seen in a week.

I have a question around exposure to sunlight whilst on the medication, living in the north east of England in winter where sun can be in short supply, do I have to put sun block on for a short 20 minute walk on a sunny day in the middle of winter? My doctor wasn't really specific - just after your thoughts. Thanks.

Hi there,

I’m new to this group and been on ciclosporin for roughly a month and a half. Seems to be working so far and all your comments have been very supportive and comforting.

I have one question though - would the ramifications be severe if I was to have an all day alcohol binge as a one off tomorrow? Or would it be adviseable to stop taking it as of tonight?

@andy lee

What is it? Since stopped cyclo, as my previous message says I had UV light. After 3 weeks they said no change, and was stopped as not working. I go back dermatologist 29/1/19 so see what else I can have. Since been on meds, I’ve had breakouts. Back legs, calves,bottom. Horrendous and knocked my self esteem. 😩 dunno what else there is......

Hi Heidiloobylou75,

There is `this:

https://www.psoriasis-association.org.uk/forums/topic.aspx?ID=1314

...a long forum but read the first post.

Good luck,

Phil

I’m 32 years old I have had Psoriasis for around 5 months now. It started as Guttate Psoriasis around my elbows then spread across my arms legs back and stomach. I tried various steroid creams and emollients but nothing worked it just got worse. I recently had a skin biopsy done to get a full diagnosis as there was a thought that it may be something else called Lichen Planus. Any how the diagnosis I got was indeed psoriasis but now the rash is so bad large parts of my body are red raw (around 80%) and very scaly. I can also see new parts appearing on my neck and face. As the condition is so bad my dermatologist said I have erythodermic psoriasis which can be fatal. So she swiftly put me on Capimune (ciclosporin) 6x 50mg capsule per day. Which i started yesterday.

So far no changes (good or bad) but I will keep you posted. Keen to hear if anyone else has experience similar to me and if ciclosporine helped?

Hello. First answer, yes can be fatal, and that's a wake up call I know. Most Important, can be controlled! I've had it about 5 years now. Cyclosporin does work. I was on it for about 18 months. There is no quick answer it will take a good 3 months before you see improvment, but bear with it.

I won't soft soap you, it's going to be a long frustrating process. You will have read all the Patients Notes. That's enough to scare anyone, but bear in mind it is written for lawyers, so if it moves they included it. Practaically, I had a tingiling taste in my mouth and fingers. Annoying but not painful. There are a number of treatments, everyone of us is diffrent. I'm now on Adulimumab, AKA Humira, which is injected, I had Psorasis all my life so though getting Erythroderma was a shock, it probably wasn't as much as it was to you.

Be prepared that it may take a while before you find a treatment that works, and the hassle of regular weekly blood tests . Drink plenty the stuff does dry you out, you may also find you feel cold all the time, the skin regulates temprature, when it don't work properly you notice. Don't panic of the dreaded V word at the moment either. Just wash hands, If anyone has a obvious cold or flu, keep a disatnce, your immune system will be suppresed , it's how Cyclosporin works, but as yours is over active anyway why worry? Where I work I and another guy who has immune problems are the only two not panicing. :-) Get as much correct information as you can, you might feel lousy, but at least you know why, and you know it works. The stuff is a wonder drug, originally developed in the early '70's it was the drug that made transplant surgery possible. So you know that you being given a proven treatment that is well understood. Be prepared the condition never goes away so it will need controlling for the rest of your life, but it won't stop you doing anything you turn your mind to. When the need to bitch comes upon you, and it will, everyone here knows how it feels, and we listen.

Thank you DodgeWC51

It really is a shock to go from 0-100 but keen to try anything that will help. Even in the few months I’ve suffered my quality of life has gone truly downhill. I am sorry to anyone who has suffered this disease for such a long time I hope we can help heal each other with good stories.

The downhill is tempoary, though there are few bumps along the way. My Mother had Psorassis , so I've always known what it was, and back then there was really no treatment, so we have it lucky. Yes, I know about people looking reluctant about sitting in a chair after you, or needing to have a vacum cleanear behind you. But it isn't you, most people once you have explained understand , the rest Sod 'Em, you can't cure ignorance. The best answer to Psorasis is don't worry about it, and I know that is easy to say, but true, stress dosen't help at all. Don't go into a coccon, Once the Cyclosporin takes effect you won't belive how much improvment there is. It can get to you, ask your Dermitologist about patient groups or your GP. and of course there is here. You sound like you fit the group that would qualify for Biologicals, ie injections of MonoClonal Antobodies such as Humira. Once the intial burst is setteled and your on stuff like that 100% clearance is possible. Talk to your Dermatologist and keep thinking forward. Lecture over. so Noli Iligitimi Carborundum!

Hi

I can't emphasise enough about making sure that you're being looked after by a good & responsive dermatology unit.

Effective treatment & care should then follow 👍

From what you've said & from my experience, cyclosporin is probably one of the fastest working & most effective medicines for severe psoriasis. But as previous contributors have said, everyone is different and it might not work first time.

Fingers crossed it works for you 🤞😁

Ciclosporin did me wonders!! I have PPP psoriasis and when it’s bad I can’t walk as it’s all over my feet and my hands get mega sore. A week after starting ciclosporin it started clearing up!! It was like magic!

However now I’m having to come off it! I have been on it for 2+ years and my kidneys are not liking it...

They said there going to send me to biologicals because nothing else is working? and Because I’m at child baring age (I’m only 27) there limited to what they can use!

Bloody brilliant Stuff! None of the side effects of Cyclosporinand has got me 99.9% clear.

Delivered to the door. Once a fortnight injection, which takes a couple of minutes, no pain. You may find when you first start the loading dose you get an od dtaste in your mouth about twenty minutes afterwards, suck a perpermint it goes away. It can be hassle if you want to travel abroad with it, as it comes in a pretty impressive injector. A hell of a lot more convient the Cyclosporin. I take the injector out of the fridge about an hour before I use it, just to let it warm a bit, less sting when injecting,

What medication is that dodge and is that from biologicals?

Yes. It's Adulimumab trade name Humira. The MAB on the end is the important bit. It stands for Mono Clonal Antiboby. It is not a chemical drug as such, it uses an antibody , which is produced by the immune system to block the factor causing Psorasis. There is a lot of good info on line , it is a complex subject. You need to find out exctaly which one your Dermitologist is proposing.. Having read all I could find on the subject, I was wary to start with, but now very happy bunny. It works it's easy no side effects and no worry about dosing every 12 hours.

They want to start me on apremilast?

However I haven’t heard anything in like 4 weeks now and they said it would be delivered so I’m a little worried?

Jsut doing a quick check, but that is an oral medicine, . I'd phone the consultants secratary.

The Britsh Association of Dermatology web site is a mine of good info. http://www.bad.org.uk/

I’m now in day 4 of taking cyclosprin. Is it normal for the condition to worsen in the first few days? I have a new rash which has taken over all of my neck, rash around my eyes, swollen eyes, skin peeling on feet and hands. I am of work for two weeks so I’m desperate to see some improvements by the time I have to go back, they way I am now I can’t see me going back to work. The pain and discomfort is unbearable...

I’m so sorry to hear that JH! I no it can be awful! Tbh with u mine started to clear up within a few days :/ but now it’s not as effective to me anymore hence why I’m changing over? It did make me feel awful like I felt sick a lot and shaky and dizzy but that soon got better. Maybe try and contact your consultant if it’s not better within the week and discuss this with them? Sometimes ciclosporin isn’t for everyone and with our skin conditions it’s abit of trial and error!

Let us no how you get on ;)

Thank you. I am seeing the dermatologist on Thursday so I’ll see what she says.

I’ve had no other side effects with it so far just not seeing any results yet which is frustrating but trying to keep positive.

Hi mate. Two weeks , you would be lucky to see any change. Be prepared for months. Anti histamines will help the itching, and emollient bath or shower gels , such as E45. Though own brand baby wash works just as well and a lot cheapear. You my well end up with a sore throat. I used dilute TCP as a gargle mouth wash, or ask your GP for something. If you had Cancer would you be in such a hurry?

Take the matter seriously! You have a life threatening condition that will not go away. The Cyclosporin will work, but it's going to take time. Most of us were on it for around a year to eighteen months., and it feels like forever. Frustration is normal At 80 % Erythroderma, be thankful you didn't end in a hospital bed. You must have convinced your Consultant that are a sensible and level headed and WILL follow the treatment routine. If you are a unioun member , at work get in touch with the shop steward and talk to him, be preapred to be off a lot longer than two weeks. We all know the frustration, we have all been there , taken the pills and chewed holes in the tee shirt. Its a long haul, but you will get it under control!

started cyclosporin about a week and half ago. I’ve seen much less scaly skin, the pain has only lessened in the last 2/3 days. Last week I was still in agony. My body is still very red and I’m now going into the hospital daily to have BETNOVATE 1.0 ointments smothered over me.

Not seen any side affects expect the odd feeling of nausea from time to time.

Slightly concerned about going to the hospital every day being on An immunosuppressant however...

The nausea is very common. You may feel odd tingles as well. It will still take another 3 weeks or so before the Cyclosporin really gets to work, then it's amazing . You do need to time the doses quite accuratley. Miss a dose by an hour or so and you will feel nauseasious. If your going out make sure you have the next dose with you. The other drag is blood tests. I thought about going down the local plumbers and getting a tap fitted to my arm. But you know you are being cared for.

The immunosupressant side, is a worry at the moment. We are all in that particular boat. Just wash hands , and be sensible. You will almost definitley get a sore throst and cough, it's Cyclosporin's trade mark. I found gargalling with diliute TCP soothed it, tastes foul, but hey! No germ virus or any othe living thing can survive it. A packet of throat lozenges is also useful to keep with you. Most importantly you are getting back in control of skin. Dear old Betnovate, my Mother had Psorasis, back in the 1960's that and coal tar was all they had. You may not think it now, but you can get completly cleared of any visible signs.

Hey again JH and dodge ;)

Yes stick wit it JH so glad you’ve found some relief and the sickness will subside after a while! I remember my first week I was so dizzy and nauseas from it and I got aches in my legs and everything but just persevere with it!

My consultant rang me yesterday and told me I need to isolate for 12 weeks because my immune system is compromised? However I do still need to go for blood tests and things? it just means to spend the majority of my time at home! Luckily I can work from home which is a bonus!

Hope you all keep safe and well with everything going on!! Xx

Hey Bethkin, all right for some! A 20second commute. :-) Be a bit difficult for me as I drive a bus. Though mostly singing to my self to stay awake at the moment, very few people about. Bluewater shoping Extrvaganza, the biggest in Europe. Car parks only about 1/3 full. One thing the Royal Navy used to do if there was an infection aboard ship was compulsory gargle with an antiseptic mouthwash twice a day. Always worked. So that's what I'm doing.

Keep safe all.

You say that dodge but I would do anything to get out the house already lol! I’m a nurse so they didn’t want to risk it at all! I feel like I’m betraying the NhS in their hour of need and feel so guilty for it! But I suppose I need to put myself first for a change!

Look at it this way. Not only would you be out of action, but how many would you spread it to? I know it's frustrating to have to sit on your hands, but there is nothing to be guilty about. You are taking a proffesional descion.

Just thought I’d update everyone. Been on Ciclosporin for around 7 weeks and have seen a really huge improvement in my skin. I’ve had routine bloods and the consultants have been happy with the results. I have recently been checking blood pressure at home as requested by the consultant and it has been raised for the last few days or so it’s In the hypertension stage 1 area. Has anyone else experienced this? I am going to call the hospital tomorrow to get their advice.

Ohhhh amazing drug. But made me feel light headed and general fatigued. Now on apremilast and disappointing, can’t change now as of covid 19

Cyclosporin is a remarkable drug, those of us of Certain Age, remember Christian Barnard doing the first heart transplant, the patient lasted about six weeks before rejection. It wa sthe invention of Cyclosporin in the 1970's that made routine transplants possible.

Drawbacks, it made my fingers and lips tingle, and my sense of taste ended up quite bizzare. Good points! It controlled the Erythroderma, and that could have killed me. Seven weeks is not long , that you're showing improvment is great, but it is only a start. There is a regime of tretaments, which your Dermatologist will explain to you, the down side is they take a Looong time. Currently your body is at war with itself, and both sides are kicking hell out of you. It gets better, Though I would be lying if I said I was sorry to come off Cyclosporin. Drink plenty and keep the dose timing regular, I found if I missed the timing by an hour or so it made me feel quite woozy. The easy thing to say, and the hardest thing to do, blood pressure varies all over the place with all sorts of things, one of the best controls, don't worry about it. Talk to your Doctor, there is a lot of knowledge about management of side effects they will be able to help you. You can always blow of steam here, we all understand.

Thanks yes it really is an unbelievable change. Regarding the blood pressure my diet has been pretty bad so It’s probably more to do with that than the drug. Doing more exercise now and will try to cut down sugar.

Not experience any side affects at all. I missed a dose by 5 hours once and I could see my body flaring even In that short time. It’s working wonders

I loved the ciclosporin! I would do anything to go back to that but uNfortunately after 2 1/2 years of being on it (which isn’t usually recommended apparently) my kidneys started playing up and no longer like it! Now I am in constant battle with my psorisis!

I tried methotrexate but wasn’t working and I was getting really bad nausea and cysts all over my face. Now I’m on apremilast... been on it for five weeks and the side effects are horrendous but it’s my last option before being sent to biologics!

Constant nausea, headaches, diahorrea, sickness I’ve lost half a stone since being on it! I’ve been getting restless legs too but apparently that’s not a side effect? Fatigue daily wanting to take naps which isn’t like me at all!

How are u finding it Heidi? And how long have u been on it? Every post on here regarding apremilast nobody has got back to me on si would be great to chat to someone that’s been on it!

On the other hand I’m glad it’s working for u JH!! keep at it!! :)

The boilogics are the last one on the list, not least as they are around £9,500 a year. I'm now on Adulimumab, Humira, It is brilliant!!! The intial loading dose is three jabs over a fortnight, then one a fortmight. You are shown how to inject yourself, simple and totally efective. The patient notes are intially scary, but as my Consultant said , they are written for lawyers . Practically biologics are easy to use and no side effects, I'm now 100% clear.

Bethkin

Well I’m not that pleased actually, the apremilast ain’t working I don’t think. I’ve new breakouts which dermatologist said can’t happen. But it is. Was working then not. Strange. I’d be interested in the biologics, what does that entail?

Thankyou dodge that’s the next step for me to take if the side effects don’t plan to calm down alittle so we will see!

Heidi that’s a shame it’s working for me at the minute but I’m still on the ciclosporin too so starting to come off that this week so will see if my psorisis gets worse. Which is normally the case when I start coming off it.

I’m not sure about what the biologics entails I just got told that that wud be the next step as there will be a wider range of medications that I could try! And it would be safer for me to have a baby on as I’m only 27. So Thankyou dodge for the heads up :)

First thing look on the National Instituie of Clinical Excellence (NICE) web site that will give you the criteria, next look at the British Association of Dermatology (BAD) web site. That will give you the clinical info. There are some useful Youtube vidioes that will explain the basics of Monoclonal Antibodoes. Which is what Biologicals are.

You will get a visit from Healthcare at Home to show you how to adminster any iinjections, then supplies are delivere dto you, mine go to my local pharmacy where I can pick them after work. They need to be kept in the fridge.

You will also get first clas sback up from pnone calls from nurses and text messages as to when deliverys will arrive and when you are due to take them.

Hi all, thought I’d update you on my situation. Started Ciclosporin on March 4th on 300mg a day. It worked wonders in that after about 2 months I was scale free. Bloods have been fine throughout. I have now also been prescribed blood pressure tablets as I was in Stage 1 hypertension which to be honest was probably more down to my diet and weight more then the medication. About 2/3 weeks ago my consultant reduced me to 200mg a day Ciclosporin and unfortunately I’m Starting to see new scales appear (and it’s looking similar to how it first started for me back in September). small circular scales on different parts of my body when picked / scratched the scale peels leaving behind a red sore, I know the docs are trying to ween me off Ciclosporin which worries me as I have a very aggressive case which I know will come straight back once I’m off Ciclosporin. Consultants Have mentioned light therapy to but everyone I have spoken to who’s similar to me had it said it doesn’t work and also I can’t physically get to a hospital 3:4 days a week due to work. I’ve been recommended Humira by a few people now including on this forum. So if I do come off Ciclosporin I really want to be put on to that. To summarise Ciclosporin worked wonders for me with no side affects.

Hi. Glad it starting to go right for you. Cyclosporin can have effects you can't see, that's why all the blood tetsts. Light Therapy can be very effective, with the added buzz you get a good winter Tan at the NHS expense, the Dopomine in winter is also a nice thing.

The problem with any long term control of a condition is a balncing act bettwen the good and the bad efffects. Have you asked why the Consultatnt want's you off the Cyclosporin? My consultant put me onto the BAD (British Assocoation of Dermatologists) and the NICE website. There is a highracki (Cannot figure the spelling of this :-) ) of treatment. with good reason, to find the minimum care nessacary for the maximum effective treatment. Have a look at the websites, get some questions ready then discus sthe alternatives with the Consultant.

Hey guys! Iv been reading this thread and y’all have really calmed me down that’s for sure lol! I have extreme anxiety especially with taking pills and I’m definitely a hypochondriac when it comes to swallowing medication 😅 i got diagnosed with eczema and psorasis at 16. Never once had any huge flare ups though until about 19 years old. Was told it was an allergic reaction though so I didn’t think twice about it. They gave me a steroid injection at the ER and it disappeared in 2-3 weeks 🤷🏻‍♀️

So after that, I would occasionally get a scale here or there but iv always had it severely on my scalp. UNTIL THIS YEAR OH MY GOD. If I could show y’all pictures on here I would! My dermatologist and doctors are going nuts trying to figure out what’s different or what caused it. There’s many theories. 2 months ago I stayed at an air b&b and I woke up in hives. Thought it was bed bugs but it was spreading everywhere so I went to ER. They told me it was an allergic reaction to something so they gave me doxycycline...my body HATED the doxycycline so I refused to finish it. Well then about a month later I ended up coming in contact with someone who had strep throat and I didn’t know. So I then developed strep 🙃 went back to ER and got prescribed amoxicillin... ended up being severely allergic to it 😩🤦🏻‍♀️ So I had about 2 days left of it and I could NOT take it.

Well because I didn’t finish that medication my dermatologist told me that I developed another type of psorasis from the strep which most of us know as Guttate Psorasis. My skin .. when I tell you looked like I rolled in multiple ant hills.. it was BAD. Tried multiple ointments, nothing worked. Home remedies, oatmeal baths, bleach baths, epsom salt baths, anti fungal baths even 🤷🏻‍♀️ my skin wouldn’t budge.

(I promise there’s a reason this story is so long lmao)

Keep in mind, iv never ever had this bad and long of a flare up. It traveled all the way up from toes to cheeks! So I went to the ER again because I was desperate and my skin was starting to burn actually.. so I convinced the ER doctor 2 weeks ago to give me another steroid shot since it worked so well for me at 19. (I’m 27 now) - DID ABSOLUTELY NOTHING.

I marched back up to my dermatologist next morning almost in tears because this was taking over my life! I couldn’t even hide it anymore with clothing at work. SO she prescribed me triamcinolone acetonide cream 0.1% and OH MY GOD this is by far a miracle ointment! It’s been 4 days and my back which was COVERED is now pretty much cleared. My legs are taking a bit longer but it’s definitely working.

I was supposed to only use this ointment to hold me over until my lab results came back to get approved for Cyclosporine. Well I’m supposed to start it tomorrow (6 pills in the morning and 6 pills at night 300mg for 3 months) and now I’m sort of wondering if I should wait a little longer to see if this ointment clears me first? Cyclosporine scares me. The side effects are really extreme and me being nervous just taking an Advil.. would prefer to not be on cyclosporine if possible.. however I’m afraid that if I don’t take the cyclosporine then this will come back in full force.

I was warned by my pharmacy, doctors and dermatologist that this medication can lead to death if not monitored religiously. Which honestly makes me feel like it’s not worth it.

I just recently lost 140 pounds so weight gain side effect scares me. I worked really hard to lose this weight. And hair loss on head and growth everywhere else?! Heck no!! The swallowing I’m reading that some of y’all are having trouble with and sore throat ?.. actually terrifying let’s be real for a second.

Who has taken a dosage as high as I was prescribed of cyclosporine who also has extreme anxiety like me? I need YALL to tell me what’s really going on 😂 the reviews are great here but the reviews iv read elsewhere are terrifying 😩 halp!

Should I be worried. .??

Ciclosporin... picked up my prescription today. ... there are some serious side effects!!

I have discussed this drug with my dermatologist.. and it’s really the only next option available ...

however. I AM slightly very worried.

Any advice pls ??

I’ve been on humira. Otezla. Methotrexate...light treatment.. you name it ... really given them all a good chance ...

But none suited me in the end ...👎. Kidney issues. Liver issues. Horrendous migraines . Severe fatigue. Hair loss ... I’ve been very unlucky regarding side effects. All back to normal now thankfully

However. Now been prescribed ciclosporin

Thoughts / advice welcome ????

Thanks in advance...

Jen

( suffering 35 years. I’m 50. And v low. It’s running / ruining my life )

Hi Jen

I've used ciclosporin a couple of times 10+ years ago, cleared my plaque psoriasis within a few weeks but both times I had to come off it because of high BP and the liver pointers were raised..

My advice would be to give it a go and if it doesn't work ask to be considered for Cosentyx/Secukinumab. Been taking it since early 2017 & pretty much psoriasis free.

Regards

Dan (54, Psoriasis from age 17)

Hello Jen. I can understand you rconcern. Any drug has side effects, However,the drug is well known, you will be closley monitored and if the dermatoligst suggests it is the only choice. I took it for about 18 months, befors going to Methotraxate and now Humira. Which for me has done exactaly what it says on the tin.

For me it took about a month , six weeks to show effects but it cleared the scales completly. The main side effect I had was a bit of tingling on the lips. You do need to keep a fairly close eye on the timing of the doses. I'm 64 now and had psorasis since I was a kid, my Mother had it and it was no big deal till about 5 years back when it went into overdrive. I can say that Cyclosporin did save me from major complications.

Thankyou.

To both responses.

It’s just good to hear from experience.. regarding these things.

I will still commit to ciclosporin, as I have all past prescriptions...

I do work outdoors , so covering up , avoiding sun will be difficult. But I’ll adjust accordingly..

strange that the sun does help , but It would cause more harm. ( skin cancer threat with ciclosporin especially I understand)

Humira was my last drug ... it worked well regarding skin, but my liver hated it .. it’s been 16 months now. And all recovered. Hence a new style of drug.

It’s great to hear you’ve found drugs that work.

Fingers crossed I will do soon.

Thankyou for your responses.

Ill update accordingly...

jen

I have took ciclosporine 3 times during my life, once at 21, 24, 27. All for different durations between 3-13 months. Thankfully i can say that the only really side effect that i had was increased hair growth and also heated fingers at the start. I would also been an extremely active person and competed in sports at an elite level and it never effected my performance at all.

The first time i took it was when i was hospitalised with erythrodermic psoriasis for two weeks with 95% coverage. It worked wonders. Thankfully when i have took it since then a short 3-6 month blast has been enough to get my Psorasis under control where i can use enstillar spray 1-2 times per week to manage at. I would consider myself a health freak and taking the medication i found very hard mentally due to the damage i know it was doing to my body. However, i have learned now that you need to balance the quality of life over the side effects and i would go with it as long as you dont get side effects. Hopefully i dont need to go on the medications again but who knows what the future holds. Good luck with your treatment, feel free to ask anymore questions and i will help where i can.

Jenora, I work outside as well,have done all my life. A decent hat,and long sleeves and trousers has always been OK forme. Though in Jersey where Igrew up we were being warned about sun exposure and Melenoma from age 5 or so.One grief though if your skin doesen't work properly, your temprature dosen't regulate properly, and on Cyclosporin,Iwouldbe shivering in a sauna:-). So might advise toinvest in some good thermals! I would also recommend , genrally for any out door activity, Gortex or other brand like Sealskin breathable socks. Keep the feet lovley and warm ,especially in wellies if your feet sweat and get cold.

Crikey.

I’m always cold anyway !!!

On a plus side. I can wear all my thermals at once now !!! Currently on 3 layers. Will take me ages to get dressed .. I’ll have to get up 5 mins earlier !!!

Thankyou.

To all of you who have written so far.

Fingers crossed it suits me.

X

Update.

Its day 5 now on cyclosporine

I would say the flare up has subsided.

And definitely not getting any worse skin wise.

However. Mentally I’m still very worried. It’s so harmful .... but my psoriasis is running and ruining my life.

Side effects were only tingling hot ache in fingers.

But now stomach aches and no appetite... nausea too.

I am going to persevere for the month up until my next appointment with clinic.

And obviously my bloods and BP...

just worried. And frightened.

Of harming my body and hating my body.

It’s not fare is it ?????

Jen

If you are seeing an effect after 5 days, it's working fast! Took a good month for me. Yeah feels like your being hit by a brick, but your whole immune system is being readjusted. One thing to watch KEEP DRINKING! Cyclosporin can cause Dehydration, and belive or not, but check the signs and symptoms, a lot of what you are feeling is associated with dehydration.

You can get oral rehydration powder, but its an aquired taste. 7 Up is a good drink but what I found economic, tastes good and worked was Tesco Flavoured Spring Water. All natural sugars. Also timing of doses, the stuff has about a ten hour half life, I found if I was a couple of hours late, yuk. We all sympathise with you, its a bloody lonley thing to go through. and you will have a hard time acepting, it will get better. I can tell you, my teddy was chaining himself to railings for the first couple of weeks. he had more flyig time than a pilot:-)

Thankyou.

Must admit. My usual thirst has depleted.

So probably not drinking as much as I used to. Because I feel rough.

I’ll try the ol ....

Head up , shoulders back. March on !!

Or

Tits out , chin up !!!!!

With loads of water of course.

Thankyou.

For being there.

Jen

Go for it Girl! :-) Any time, if we don't help each other, who will?

Hello folks, first time poster here and was looking for some thoughts on cyclosporine.

I was using enstilar foam for around 1 1/2 years to combat psoriasis plaques, it worked pretty well initially then the effectiveness gradually declined.

I started cyclosporine last week 100mg x 2 per day (I’m 90kg) and have came off enstilar to see how cyclosporine does itself without anything else with it. I’ve heard it is really effective.

However, my skin has flared pretty badly everywhere and there’s been no sign of it calming down.

I’ve been on cyclosporine for 8 days now and had no side effects (except the odd minor headache)

Has anyone else had a similar experience? Could it be the withdrawal from enstilar? When does cyclosporine effects usually kick in?

Thanks all, K

Hi.

I’ve also been on cyclosporine for roughly the same time now. Initially I thought my flare ups had calmed .. but sadly no.

Still so sore.

I’m back to using Enstillar again. As well as the drugs.

I’m also suffering from side effects.... badly.

So prob stressing from those ...

I’m sorry I can’t help at the mo. But there is a strong support on this blog.

Let’s hope we get results soonish. ??

X

Welcome in. Yes it does take time, how long varies , For me it was a couple of weeks before I saw a real diffrence. Also it is quite depressing how quick the Psoriasis flares when you stop or change tretament.

Make sure you drink plenty, The stuff can cause dehydration, which has enough side effects of its own. I also found I had to time the doses carefully , within a couple of hours or so. I hope it works for you.

Why don't both of you at least mention to the Dermitologists about Biiologics? You may have to run through the other treatments first, but Adulimumab , Trade name Humira, really is ideal. You inject yourself once a fortnight with a pen. Takes about ten seconds and forme zero side effects.

Thanks a lot for your replies Jenora and Dodge, it’s really helpful hearing from those going through/have been through a similar experience!

I know it’s early days in the cyclosporine treatment but the immediate flare after stopping enstilar caused me some concern. The ups and downs of this condition are never ending...

I’d be interested to hear about your progress as you go through your cyclosporine treatment Jenora, I’ll ensure I post regular updates here of how I’m getting on.

Thanks again folks, K

DodgeWC51, I have had numerous convos with my derm regarding biologics as, in my research, they seem to have less potential side effects and target only a specific part of the immune system...

However, they say I have to go through the systemic medication route first before I’m considered for biologics. (Which I totally disagree with)

Is there anything I can mention to my derm that may get me to the biologic stage quicker?

Many thanks, K

Not that I know of. It depends on how you tolerate other tretaments. One problem with Bilogics is cost about £740 a dose, It was about three years before I was put on them.

I was put on humira before cyclosporine...

But sadly for me. My liver reacted quite badly to it .... that was 16 months ago. Now recovered, Took a while but back to normal.

Last 24 hrs .. horrendous.

Feeling too rough to move. Headache !!!

Nausea.

Dodge is so right.

Keep an eye on on hydration. And exhaustion !!!

You can’t afford to ignore these signs. I’m suffering.

Jen

Il keep updating you , k,

Doctors , friends even family mean well and are sympathtic. Very nice , but you haven't laid here with the world spinning inside your head. Both of you are at war with yourselves. Your bodies are kicking crap out of them selves. And it hurts!! The up side is it does get better! Slowly and not easily, but it does!! It took me 6 months, and I've always been active and outside, up to all sorts.Being told you can't the answer is B**locks! But when uor body says 'No I won't letyou'.God, did it get me down. But iut does get better.Hunker down for a long haul, we are all here when the urge to scream gets to much. But when the light does comeon, it's Glourious ,every day a bonus , and do you really start to appreciate life.I wouldn't reccomemend it, but I belive it'smade me a better person.

The old man will now retire! :-)

Onemore thing. I found gargalling with diluted TCP,really helped the throat.

Sorry to hear about the bad side effects Jenora, I hope they resolve quickly for you! What dosage are you on if you don’t mind me asking?

Still no major side effects here, I’m on day 9 now.

Looking through the thread it seems like others are on a larger dose than I was recommended by my derm (I’m on 200mg a day and seen others on 350mg...ish)

Thanks for the advice DodgeWC51, much appreciated!

K

Yup.

Thanks dodge.

Feel a little ray of hope shining now ...

K....

I’m on 100 am/ 50 pm.

Slightly lower dose than you ..?? But basically think we are at a similar stage.

The dose for me built slowly, Can't remeber what it ended up I do remeber the first words the Consultant said to me when I saw her. 'Tell me why I shouldn't put you in hospital?'. That was a shock. I know freinds and family mean well, but at your stage I was thinking, what do you know about it? That and the frustration why I can't I do things, and that was without the added mayhem of Covid. Just know everyone here knows the paractical truth, No false smiles nessacary. Though we can also say it will get better

Hello all,

Just an update - that’s me finished 2 weeks on cyclosporine. Still not obvious improvement in my skin and also no significant side effects to report.

Was in hospital for my 2-weekly blood test and BP check today. BP absolutely fine and will need to wait for blood work results.

I’m starting to think my 2 x 100mg dose may be too little for me. I don’t see the derm for another 6 weeks to discuss this unfortunately :(

How’s everyone else getting on?

How are you doing Jenora? Hope the side effects have calmed down

Take care, K

Hey K. So far so good. Patience! It is a long slow crawl, Your whole body has to adjust. The dose will vary as you get acustomed to it, and the Dermatologist sees how effective it is, thats why the six week gap, no point before.

I know how frustrating it is, but good news on the BP etc.

Evening.

Good to hear from you both ..

K, We do seem to be on the same time frame .... I also went for bloods today ( although a few days late ) 18 days. Should’ve been 14 ... am doing my own BP, that seems fine.

Still suffering. Although a little improved from last week. Painful kidney area and stomach ache constantly... spoke with my dermatologist yesterday. And she’ll keep an eye on the results.

My job is very physical.. not helpful at the mo. So quite exhausted. However. I eat plenty. And am drinking masses !!! (Water, not gin sadly 🤪)

I would say my skin is no worse. that’s a plus at least !!!!

So. We keep going.

X

Hey Jenora, seaweed extract isupposed to be good for animals coats. The Scots, yes the Scots, make a gin called Da Mhile with seaweed extract , so its medicinal! :-)

Not the best weather to be out. WhereI amgrey skies andconstant rain.I'mconsidering hibernation.

Evening...

Just wondering. How you’re getting on K ??

And more importantly, any side effects yet ???

I’m asking as I’m still suffering..

skin is actually improving, mildly. No flare ups and the itching and burning has subsided ... so that’s great ...

But ....

Pain. Around my liver specifically, Sometimes severe ... shortness of breath too.

I’ll contact my dermatologist tm.

But was wondering if it’s a common feeling at the start ????

Jen

Hey,

Aw I’m sorry the side effects are so troublesome. I agree that a chat with your derm would be a good idea - they’ll advise and hopefully put your mind at ease!

For me I’ve had a few mild headaches over the past couple of days and a bit of fatigue - nothing too major.

Still no improvement in my skin, starting to think it might be topical steroid withdrawal as I completely stopped using enstilar the day I started cyclosporine and a few days later a flare occurred and no sign of calming down as yet ( 2 1/2 weeks in)

Has anyone else experienced this?

...but yes DodgeWC51 perhaps further patience required on my part!

K