Cyclosporine

Posted Wed 20 Jun 2018 9.50am by Josie

Hi all starting cyclosporine today just wanted to know do we take it at the same time everyday? Or is it just the same way everyday eg:if taking with food always take with food for example.

Was on methotrexate for a year did not do anything but give me side effects, as cyclosporine does not help with pain what do you all do to help with pain? And

Is it OK to still take supplements. Sorry for long post thank you all. 😀

Posted Wed 20 Jun 2018 10.57am by OhNo_NotAgain?

Josie - seriously these are questions you should direct to the doctor who prescribed the cyclsporine for you.

The prescription should specify when you should take it eg with food, before food, after food.

Generally I would always take a daily medication at roughly the same time of day - more to develop the habit and maintain a regular dose to the body than any other reason - but again, your doctor should advise.

As for supplements: read the patient leaflet, and ask your doctor. I would not be at all surprised if some suppleents are perfectly OK to take and some others should be avoided in your circumstances. Only your Doctor can really advise what you need to do, knowing your overall health.

Posted Wed 20 Jun 2018 11.24am by Josie

Ohno_notagain, it was general enquiry about how other people take this drug, this reply seems kind of rude I did ask doctors but sometimes you actually want info from people who are on the same medication who can advise with first hand experience

Posted Thu 21 Jun 2018 1.09am by ScottishGirl
Had psoriasis for 15+ years

Hey Josie,

I’ve just been started on ciclosporin yesterday. I’ve to take 2x100mg a day. I take one at 10am and one at 10pm. I’m sure I read on the leaflet it has 12 hours life so need to be 12 hours apart. I’m not sure from your post though if your taking 1 or 2 a day. I would avoid all herbal vitamins etc. I was taking vitamin d3, omega 3 and turmeric capsules for weeks then stopped them when I started on ciclosporin just because I myself was worried they would counteract with the drug or something. Its best just taking the ciclosporin without any other vitamins but that’s just me but I’m sure it wouldn’t do harm but check with the dermatologist/GP just incase. Like all medication it’s better to take with food. Even if it’s just a little snack. So far I’ve taken 4 tablets and I’ve had burning in my index fingers, my toes felt like they had been frost bite when I had a bath and last night I was seeing flashing red, blue and white lights when I was in my bed. Both when my eyes were open and closed. Also hallucinations where I thought I seen someone at my room door and seen a pair of eyes on my wardrobe door. Prettt scary! I hope I’m not like that tonight when i go to bed because I was terrified hanging on to my partners arm! lol apart from that all is well lol I hope you get on well too.

Posted Thu 21 Jun 2018 8.44am by Josie

hi Scottish girl, blimey that must have been scary hopefully a one off side effect. I did get very hot hands after I took mine which lasted for a couple of hours. Let's hope it works and clears us up. X

Posted Thu 21 Jun 2018 11.05am by OhNo_NotAgain? (edited Mon 23 Jul 2018 8.47am by OhNo_NotAgain?)

Josie, I am sorry that you thought my reply was rude - it was not meant to be, simply matter of fact. Re-reading my post I still do not see that it is at all rude. I suggest that you actually read the words of posts, and dial back on the sensitivity and any imagined slight.

Your specific questions about supplements can only be answered fully by someone who knows which supplements you wish to take, and why you wish to take them, eg in the context of your general health.

If there might be any contra-indications together with cyclosporine then part of the consideration might be which is the greater issue - the benefit from the suppllement or the degree of any conflict?

Many people on here could have years of experience of their own condition. A dermatologist or other specialist is likely to have experience of treating hundreds of patients with different types of psoriasis and different degrees of severity.

I have seen posts from people on here who refuse to take the medications prescribed to them and seemingly prefer to ask advice from unknown strangers. Some others decide to only take a part of the dose that they have been precribed - or take it for less than the initially recommended trial period and then complain that it was not effective.

I notice for example that Scottishgirl has said "Like all medication it’s better to take with food. Even if it’s just a little snack. " - I would probably have agreed with that at one time, but recently I was prescribed a course of antibiotics and the prescption and patient leaflet specifically said "take 30 minutes to 1-hour before food". Both myself and Scottishgirl have recommended that you consult the doctor that prescribed your cyclosporin.

Posted Fri 22 Jun 2018 3.08am by ScottishGirl
Had psoriasis for 15+ years

Yeh that’s pretty much what I was meaning too oh no not again about the food, it’s best to eat atleast something whether it be before or after just whatever it says on the leaflet to do then go with that. I never had any hallucinations last night so that’s good. I’ve had burning in my fingers whilst i was out shopping but it only lasted about 5 mins then was gone because I was going to ask how long you get it for but i can see from your last post you said a couple of hours! Wow that’s long and i hope mines doesn’t last that long! Lol yeh let’s cross our fingers and hope it helps. It is a very powerful drug so I don’t see why it shouldn’t but everyone is different! Our bodies are unique to us. I think they have a strange smell, kinda like beer lol

Posted Fri 22 Jun 2018 3.56am by Josie

Hi Scottish girl I agree about the smell horrible glad to hear no more hallucinations during the night x

Posted Sun 22 Jul 2018 8.31pm by Originalbeany

Hi everyone just wanted an opinion on cyclosporine i've been given 50mg as i have a slight fear of tablets after a really bad experience with acitretin such as simple hair loss, weight loss, near fainting just wanna know if cyclosporine is gonna be worth it?

Posted Mon 23 Jul 2018 8.41am by OhNo_NotAgain? (edited Mon 23 Jul 2018 8.43am by OhNo_NotAgain?)

Originalbeany: nobody on here (or perhaps anywhere) will be able to tell you if taking cyclosporine will be "worth it" for you.

Some people have excellent resuklts, some do not. Some have terrible side-effects, some do not. There are people having experience at all stages between those extremes.

All you can do is try it - follow the advice you have been given for taking it, and see what you find. Even if you have side-effects, it is up to each user to decide whether the side-effects that they experience (if any) are worth putting up with in the light of the improvement in their psoriasis.

for example - even mild side-effects are probably not worth it if you see no improvement in your psoriasis. If however cyclosporine cleared someone's psoriasis, they might consider any side-effects to be tolerable.

Posted Mon 23 Jul 2018 11.29am by mnf441

I was recently on Cyclosporine, which I was recommended to take with food. 150mg in the morning and 100mg 12 hours later (which must be adhered to very strictly everyday). Side effects for me (but not everybody gets these) were 'firey' fingers and sometimes feet lasting from circa 30 mins after consumption for about 1.5 hours). Unfortunately, blood tests came back not so favourable for my kidney functions, so my consultant put me on biologicals, which i'm waiting for from the drugs company. I have to say that for the short time (circa 8 weeks), it did improve signs of the psoriasis and I also did not suffer from any episodes of arthritic fingers.

I hope this helps

Posted Sat 24 Nov 2018 11.52am by Anna1

Hi, Ive been on ciclosporin for a couple of months not and for the first time in 22years I'm almost clear. My psoriasis only flare's up with stress and anxiety. I am also now on sertraline and with this my psoriasis is clearing up double fast. Just out of curiosity! Has anyone ever come off of ciclosporin and Never had a bad relapse after???

Posted Wed 28 Nov 2018 4.47pm by Dolly123

I'm 23 years old and my life has been ruled by psoriasis ive had psoriasis since my teens and after having my son it's completely flared up, I am so self conscious it's unreal. I have just had to come off skilerence due to being allergic to something in it. They are now going to put me on Ciclosporin if all is well with my chest xray and bloods I was wondering how people got on with it? And how quickly it worked for them?? I'm a bit worried as it says it theres a higher risk of getting canser and makes it grow aggressively. If you had to choose would you choose Ciclosporin or methatroxate??

Posted Wed 28 Nov 2018 4.51pm by Josie

Hi dolly123 personally for me methotrexate did not work cyclosporine did was clear within a month make sure you have regular blood tests. I have been taken off it now and unfortunately flared up within 3 weeks hope you have success with whatever medication you go for x

Posted Wed 28 Nov 2018 5.48pm by Dolly123

Hiya Josie, thank you for your quick reply. Could I ask how long was you on cyclosporine for, as I know you can't be on it long term. Also was the side effects bad? As when I was on skilerence I got very bad side effects and wasn't on it for very long. Thank you for your comments and hope you get your psoriasis under control. X

Posted Wed 28 Nov 2018 8.37pm by Josie

Hi dolly123 i was on cyclosporine for 6 months side effects for me were migraine

Tingling in my hand and feet and cold sensation in hands and feet apart from the migraines they did not last long about 30 minutes I had blood tests every 2 weeks I'm now waiting for my appointment which is end of next month and hope they can give me something to help, good luck to you too just remember we all react differently and I hope your side effects are minimal x

Posted Fri 8 Feb 2019 10.54pm by Sooty and Sweeps Mom

Hi everyone, first time on a forum. Been on Cyclosporine some years ago and then Methotrexate. Now back on 2 x doses of 125 mg Cyclosporine a day and it is working fantastically. I seem to have had a lot more side effects this time round. There is one strange one that isn't on the patient leaflets and I wondered if anyone else has experienced this. After taking 125 mg dose has anyone smelled of alcohol afterwards? I know they are ethanol and contains 12% vol (70% of a 100 mg capsule). The coating smells awful too. I took my dose at work this morning and people thought they could smell alcohol, just wondered really x :)

Posted Sat 9 Feb 2019 0.14am by Josie

Hi sooty and sweeps mum,

Yes I agree they smell awful, and yes if I have taken them at work and someone is close to me they do notice when you open packaging. Glad you are having good progress with it x

Posted Sun 24 Mar 2019 10.28pm by Anna1

Hi all. I no longer take ciclosporin as it caused me so much pain but it did clear up my psoriasis amazingly until I stopped and it came back with a vengeance. They then put me on Acitretin which did nothing at all accept make my hands and feet really sore. I am now on my 3rd week of Skilarence and I'm already seeing an improvement. I have read in other forums that this can cause immense stomach cramping, fortunately I have not had and of these side effects as of yet but I'm putting it down to my dermatologist putting me on 180mg of fexofenadine once a day. Has anyone else ever tried this??

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