Ciclosporin or Methotrexate - Advice help!

Posted Fri 15 Feb 2019 10.54am by Nik2019

Hi All,

I have been suffering with severe scalp P which has also gone to my forehead, nose, belly button and nails (nails keep lifting and eventually falling off) for about 5 years now. Ihave tried every type of topical treatment going with no help at all.

my doctor has just advised that my only option left to try is to take either ciclosporin or methorexate.

I am so confused which one I should try. I've been told I can only take ciclosporin for up to a year and methotrexate is long term. There is also a chance that the p has gone to my joints too (waiting for a referral to see)

Does anyone have any advice? I am 31 and at my wits end with it all. I've read that at lot of people as soon as they stop ciclosporin their p comes back very quickly and with a vengeance.

what side effect/results have people experienced?

Any advice to help me make my decision?

Thanks

Posted Fri 15 Feb 2019 11.58am by Salty Backpack

I had complete clearance with Methotrexate but had to come off after a year due to red blood cell count...no side affects at all.

Have you looked into your diet/life style before having these?

Posted Fri 15 Feb 2019 12.01pm by Nik2019

yes, tried everything nothing seems to work. was advised caffeine could be an issue so completely cut it out 2 years ago with no effect along with various other things.

when you stopped methotrexate did your p come back?

Posted Fri 15 Feb 2019 12.25pm by Salty Backpack

yep, it started to come back before they took me off it.

i only asked about lifestyle etc because since October i cut out all red meat, sweets, crisps (anything nice) which left me with veg, fruit, fish & Chicken....my skin cleared over 3 months.

im left with minimal P :)

Posted Fri 15 Feb 2019 1.59pm by Summer

Hi Nik2019

I started methotrexate 4 weeks ago. I have P, also been diagnosed with psoriatic arthritis. Some of the joints on my fingers were swollen and very tender also my ankle but not so bad. , GP sent me to a rheumatologist Who suggested methotrexate, she only gave me 4 weeks, Iv had no side-effects and the pain and swelling i would say is massive improvement, I will have to see what she says on my follow up,

All the best

Posted Sat 16 Feb 2019 6.47am by anupam

My father aged 73,a diabetic patient,is on cyclosporine for the last 4 months(100mg*twice daily),which cleared his pustular psoriasis..He is suffering from this disease for the last 14 years and was on methotrexate on and off.But now methotreaxate is not working.I am eager to know.

,considering the age of my father,can cyclosporine be discontinued now or the dose be reduced.

Thanx

Anupam

Posted Tue 19 Feb 2019 9.05pm by Eve29

Ciclosporin is the DEVIL! Dont take it.i was on it for 6 months then had to come off.It worked like magic cleared my psorasis up great.But was told i wasnt allowed to stay on.when it came out of my system.Get ready for the worse flair ever made my psorasis worse than it was before and in new places 😞.might not happen to everyone but just thought i would share the experience just incase anyone was thinking about taking it.

Posted Sat 2 Mar 2019 1.05pm by charmarr

I will be 70 this year and have been on Cyclosporin for just over a year.

It cleared my psoriasis within weeks.

I was started on a high dose but now take 100mg per day.

My consultant tells me some of her patients have been on a low dose for years and it keeps it under control.

I have to have kidney function tests every 6 weeks plus regular blood pressure tests.

When I tried to lower the dose to 50mgs per day the rashes came back.

Posted Sat 2 Mar 2019 10.07pm by Nik2019

Hi,

So I have just started ciclosporin (day 2) and seem to get a hot throat a short while after taking the medication. Has anyone else experienced anything like this?

Posted Sun 3 Mar 2019 7.33pm by Laurie

Im on day 5 with ciclosporin and my p is spreading all up my arms I now have little spots too!! When I apply it my skin gets so hot and makes me itch....

So I wouldn't recommend it, stopped applying it tonight and going to call doctors this week.

Posted Sun 3 Mar 2019 9.10pm by MabelD2019
Recently been diagnosed with psoriasis and it's spread everywhere

I just saw a private doctor and was prescribed ciclosporin, but only discovered when I got home from the pharmacy that the capsules are gelatin cases and I'm vegetarian.

I haven't taken these tablets and am going to call the private doctor tomorrow. Aside from being down by £120 odd, I'm now worried after reading this thread that it's not a good medication to take, as it will all come back once you stop. I was diagnosed recently and it's spread now everywhere apart from my scalp, so far and fingers crossed (hence private doctor).

Has anyone had success with methotrexate? Is that a capsule medicine? Was there a major flare up when this was stopped?

Advice please, as am worried. Thanks

Posted Sun 3 Mar 2019 9.43pm by charmarr

You have to try it.If it does not help you can stop taking it.

Like you I was apprehensive about taking it but it has changed my life.

My symptoms were so bad I was not able to sleep for more than two hours in any day,and I only got that amount because I was truly exhausted.

As I said in my earlier post I am on 100 msg per day..

You may be lucky like me..I know I may have to stop taking it sometime in the future,but I am so grateful that I have my life back.

I think you should remember we are all individual,it may turn out to be the best decision you have ever made.

I know it was the best decision I could have made.

If you do go for it,please let us know how you get on.

Posted Sun 3 Mar 2019 9.52pm by Eve29

Hi mabel if i was you i would avoid tablet form,unless you really want to.Go for uvb light thearpy and creams less harmful to your body.I was on methotrexate ,I've just come off 3 weeks ago.It does work but you have to build the tablet up until your psorasis is undercontrol.i think its 8-12 weeks until you see improvement.You have to be monitored kidney/lung checks and bloods taken quite often..Have a good read up about it first

Posted Sat 9 Mar 2019 3.12am by anupam

Dear Sir(Mr Charmarr),As you are almost my fathers age,If I can ask you one question,do you experience any weakness , daytime sleepiness or severe exhausition after a small walk after taking cyclosporine all these months.My father is on cyclosporine 150mg(daily) for the last 3 months for his pustular psoriasis.Before that he was on methotrexate on and off for the last 7/8 years.Stay fit stay healthy.Regards.

Posted Sat 9 Mar 2019 10.23am by charmarr

Hi anupam.The only problem I have found is a bit of weight gain which of course could have nothing to do with Cyclosporin

I do not experience the symptoms your father is having but would say stick with it.

It has given me my life back.I hope he can get the same benefits that I am getting.

Best Wishes.

Posted Sat 9 Mar 2019 3.05pm by MabelD2019
Recently been diagnosed with psoriasis and it's spread everywhere

Hi Charmarr and Eve,

I haven't started taking the medication yet, as have been given a liquid form of cyclosporin. Just waiting to collect from pharmacy on Monday. My P has now spread to my scalp, so that is now every inch of my body literally head to toe, including my face. To say I'm depressed is an understatement. I read on another post on this forum that eating blueberries everyday, with no prescribed medication has helped clear people's P completely. People who have been suffering for over 50 years and no totally symptom free. However, there are others who tried It and it didn't work for them. I'm so confused as to what I should do, blueberries or cyclosporin? Any advice, anyone? Would really appreciate it.

Posted Sat 9 Mar 2019 5.08pm by charmarr

Hi Mabel.You have to try the Cyclosporin.If it does not work you just stop taking it.

As I said in an earlier post it was a life changer for me.

Good luck.

Posted Sat 9 Mar 2019 6.20pm by anupam

Thank you Sir(Mr Charmarr) for your kind advice and guidance.Unnecessarily I was blaming cyclosporine for my father s other complications,today found that is due to some cardio issue.My fathers P is almost 80% cleared and I guess for some people it is like a long term therapy in low doses....Lets see how my father fairs.Thanx & Regards

Posted Sat 9 Mar 2019 8.21pm by charmarr

That is great news anupam.Make sure your father has regular blood tests to check his kidney function.

Best Wishes.

Posted Sat 9 Mar 2019 8.41pm by Eve29

Hi Mabel,it must be a proper shock to you to just get covered in psoriasis just like that..how old are you?I was diagnosed when i was 17 and 29 now.ive tried most things and getting worse with age,spread to hands and feet.As ive said i took myself of tablets (mxt) cause my white blood cell was low,and kinda thought what am i doing on this tablet at my age,what damage is it doing to my insides.so bought a sunbed uvb and taking tumeric tablets now working well for me(even tho theres a risk of skin cancer).its a bit like you carnt win with this skin condition lol.If its really getting you down just go for cyclosporine.it is a really good drug and clears well...just look after your health while your on 😊.I dont know why but my dermatologist said i was only allowed on it for 6 months,But read on here people have been on it for years.And to be honest i would have still been on it,if she didnt take me off cause it worked that well 👍🏼.I didnt have any bad side affects while taking it too.Its only when i was took off it came bk worse..x

Posted Sat 9 Mar 2019 9.45pm by Bethanylouise0x

Hi,

I am new to the forums but have just started ciclisporin so thought I’d give you my account of taking it.

I started the medication almost two weeks ago, first few days I was fine, by day 4 the side effects had crept in. I’m suffering really bad with stomach pain, neausea, back pain, head aches, numb/hot and cold feet and hands as well as tingling in my lips and headaches. Everything I can deal with but I am really struggling with the stomach pain, it’s awful - that bad that I haven’t been to work for the last two weeks that I have been on it. My psoriasis is getting better though for the first time in 6 or so years... I am only 24. I have severe psoriasis on my hands and feet including nails, as well as my whole body including my scalp, but my hands and feet effect me the most. My hands are no longer filled with scales but are just red now which is better. So the side effects are worth it (I think!?) I don’t know if I can put up with the side effects for 3 months but I’ll see what they say at the hospital Monday when I have my checkup for my blood pressure and bloods. I’m hoping that I can continue taking the meds but take a strong painkiller with it so I can go back to work.. has anybody had anything similar?

I have tried every cream going, as well as PUVA light therapy at Addenbrook but nothing worked, my dermatologist they said she would put me on ciclisporin as methotrexate takes longer to work. Which like I said after 4 days I noticed a difference.

I’d give either a go to see which works, although according to my GP, who also has psoriasis, ciclisporin is a high dose medication and I am the only one under the local practice that is on the medication, he was quite surprised when I told him I was on the medication and that the dermatologist dr hadn’t put me on methotrexate, but I suppose that’s one drs opinion against another.

Good luck either way!

Bethany :)

Posted Sun 10 Mar 2019 10.13am by MabelD2019
Recently been diagnosed with psoriasis and it's spread everywhere

Hi Eve and Bethany, thanks for your replies. I'm 46 and was formally diagnosed about a month ago but the P started two years ago. The P has spread everywhere including my face.

I'm really nervous about starting this cyclosporin medicine. I've now been prescribed the liquid version, which I can collect tomorrow, I'm just not sure if I want to start it. I am even more worried now I hear how you're suffering with the side effects Bethany.

I guess I have a lot to think about and just make a decision.

Thank you all so much for your comments and advice. Mx

Posted Sun 10 Mar 2019 12.22pm by Bethanylouise0x

Sorry if i scared you with my side effects, didn’t mean to do that, just wanted to be honest. Also I have read quite a few forums about Ciclosporin and it’s side effects and the majority of people seem to have tingling in lips, and numbing/warm/cold sensation in feet and hands. I think my pain in my belly is worse possibly because I have ibs too, but I’m not too sure.

I’d give it a go either way, because once you see the positive results of the psoriasis getting better it gives you a boost. If you do get side effects and they are bad then you can make a choice whether to carry on or stop.

Good luck though Mabel!

Bethany

Posted Sun 10 Mar 2019 9.47pm by Stan

Hi Nik,

I tried both treatments one after the other years ago for guttate, including scalp and they caused me issues which were detected with the accompanying blood tests. One caused me problems with Liver function tests the other Kidney, I think it was methotrexate with the kidneys and cyclosprin with the liver, but it was a long time ago and there is a small chance it may have been the other way around? Either way keep an eye on your blood test results, question the Dr as they are very important.

Personally I don't like the chemo drugs, taking down your entire immune system seems overkill, I'll never go down this route again. I have had good results with Remicade (Infliximab) biologics that only targe specific T cells.

Posted Mon 11 Mar 2019 0.45am by MabelD2019
Recently been diagnosed with psoriasis and it's spread everywhere

Hi Bethany,

Please don't worry, I'm thankful you were brave enough to share your experiences and I really appreciate that.

I know with lots of things these days comes with warnings of side effects and issues, and I understand that everyone is different and people experience different things. In saying all of this, I tend to be that small percentage of people that tend to experience the bad stuff!

That said, I'm not going to start the cyclosporin just yet. I'm sticking with the blueberries, as after just one week I've already noticed a change in my P for the better.

I hope your stomach pain and other side effect problems ease off very soon.

Take care, Mx

Posted Mon 11 Mar 2019 10.37am by Max

I have had psoriasis for nealry two years now, I was on cyclosporin for months and then when taken off it flared right back. I am on it again but if it doesn't hold I think a life style change is the way to go!!

Posted Mon 8 Apr 2019 10.46pm by jk76

I was given ciclospurin. Done nothing for me apart from give me low mood. They were going to try me on methotrexate but that can cause low mood too so now I don’t take any prescribed tablets. You just have to try. What might suit one won’t suit the other. Trial and error

Posted Tue 9 Apr 2019 0.21am by MabelD2019
Recently been diagnosed with psoriasis and it's spread everywhere

Thanks for your comments. My Psoriasis exacerbated recently and started getting me even more stressed out and depressed, so I decided I had to try the ciclosporin. The consultant also told me to take a steroid tablet for the first two weeks, as it was so bad.

After one week I have finally started to see some good improvements. However, I am starting to get worried that when I do come off it, my psoriasis will flare up. So many people have said this is what happened to them.

Is there anyone out there that took ciclosporin and didn't have a massive flare up after they stopped it?

I want to remain positive that this treatment will work well for me and it won't flare up once I stop taking it.

Thanks, Mx

Posted Tue 9 Apr 2019 10.40am by scc

Hi Mabel,

I have been on cyclosporine for the last 14 months and it has worked wonders for me with no side effects apart from high blood pressure (make sure you have your tests done regularly). The relief from the P was amazing and I managed to get my old self back, less anxious and I could relax for the first time in years. Like you I was very resistant to taking the drug but the P was so bad I felt I had to and I am glad I did now, I hope you have positive results too,

I am now seriously considering Methotrexate, which I always said I would not do, as being out of pain and not scratching all the time is amazing and I had forgotten what it was like (P since 14, severe P from the age of 17, now 35 years old).

I am seeing the Dermatologist tomorrow and I am due to come off the cyclosporine then so I will let you know how the skin reacts as I have heard horrible things about the flare after.

As a side note, my Dermatologist for years has told me that it will be Cyclo, Acetretin (did nothing for me apart from lower blood count) and Mxt before the injections. I find it sad that with all the new, targeted drugs (and bio-similars) available that we are made to take the older, broad acting drugs like these which have wider health implications before being given the option of the more modern drugs. I appreciate the newer drugs are expensive but this disease takes so much from us yet sometimes it feels as if it is better to suffer with P than the medications they prescribe to help us!

All the best

Posted Tue 9 Apr 2019 1.17pm by charmarr

Hi SCC.Why is your consultant taking you off Cyclosporin?

I have been taking it for more than a year with the same results you have been getting.

I mentioned earlier in this post that my consultant has put me on a low dose to see how I react.

The low dose is keeping the P under control.Consultant says low dose on some of her patients has the same results.

I can't understand why you are stopping Cyclosporin when you are having such great reaction to it.

Posted Wed 10 Apr 2019 0.39am by MabelD2019
Recently been diagnosed with psoriasis and it's spread everywhere

Hi SCC and Charmarr,

Thank you both for your comments. My consultant has put me on a three month course of liquid cyclosporin, with reduced dosage after one month. My main concern is when I'm taken off the cyclosporin that the P will flare up again and with a vengeance (so I hear).

I'm pleased to hear your P has much improved since starting the cyclosporin. Like Charmarr, I don't understand why your dermatologist is changing your medication if this is working for you?

My P is also starting to improve and it is already having a positive effect on my confidence. I trust both your's and Charmarr's treatments have continued success!

Best regards, Mabel

Posted Wed 10 Apr 2019 3.20am by anupam

Dear Mabel.It generally depends on age and other ailments.80% of people with age under 60 and less other ailments face good result with cyclosporine or methotrexate although after tapering down those medicines slowly.Dont worry your doctor will take necessary steps.If you take this disease as other diseases like diabetes,lipids,bp etc you will be more than happy.Giving too much importance to P gives it reason to flare up😀....Be relax and leave the tension on your doctor.Can start homeopathic treatmnt side by side,if your age is within 6o to get more long term relief.I know all this as I know this disease for the last almost 18 years...Thanx...Relax and be happy.

Posted Wed 10 Apr 2019 9.22am by Kay

Hi I dont know if this will help but I've had all kinds of different treatments over the years and the only one that really worked and cleared my psoriasis completely was Adalimumab. It's a pre-filled injection pen that you use every 2 weeks I have been using it for about 5 years hope this helps anyone.

Posted Fri 3 May 2019 4.42pm by scc

Hi Charmarr and Mabel,

Apologies for my delayed reply. It has been nearly a month since I stopped taking cyclosporine and I am pleased to say that I haven't (yet) experienced the horrible flare that some do when them come off it. I am unsure when other people started experiencing the flare so I don't know if I have avoided it or it is round the corner!

I am starting to get mild patches back and I have the odd itchy day but it is nothing like what it was before I went on cyclosporine so at this stage I am pleased with having taken Cyclo and come off it. The Consultant said I have the option of Mext or injections and we will discuss in a couple of weeks when I go back for a post Cyclo review.

I was told from the start that cyclosporine is only an option for 1 year due to effect long term usage can have on the kidneys. It's interesting you have been told differently. Has your Dr time limited your usage in any way? As I said I soon developed high blood pressure, have you had this from the Cyclo? I understand that kidney issues can cause high blood pressure so maybe my bodies reaction to the Cyclo (i.e. high blood pressure)prevents longer term use, even if the intention was for one year in the first place.

I hope you are both faring well, it would be good to hear about your progress and from anyone else who came of cyclosporine and can share how their P reacted.

Posted Fri 3 May 2019 5.16pm by charmarr

Hi scc.

Glad you are responding well to coming off Cyclosporin.

I saw my consultant last week and she is keeping me on 100mgs a day on Cyclo.She is keeping tabs on my kidney function and blood pressure.She said there will come a time when my body will say ENOUGH Cyclo and that is when she will have to take me off it.

I have had to up my blood pressure tablets because it was quite high.The important thing is finding the right balance.

I have now been on Cyclo for 1 year and 3 months.

Please keep me posted on how you are doing.

Posted Tue 14 May 2019 1.54pm by khenry

Hi, I have just been prescribed ciclosporin but am worried about the serious side effects. Did anyone elses consultant talk to them about an increase risk in cancer due to the way the drug suppresses the immune system. Is this a big risk? As i would obviously prefer to live with my P than get cancer due to taking medication.

Posted Tue 14 May 2019 4.31pm by charmarr

Hi khenry.Havent seen anyone on this site mention the cancer risk taking Cyclosporin.

Because of the suppressed immune system you have to take care if you get an infection.

My consultant told me if I get any kind of infection I should get in touch with my GP immediately and get a course of antibiotics.

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