ciclosporin

Posted Mon 4 Mar 2013 18.49 by AprilLeckenby
I have had psoriasis since I was 6 and from that age I have been in and out of hospital and tried every treatment going. I am currently on c

So I have tried every treatment going and I have severe psoriasis all over my body usually so for the past year I have been on ciclosporin but can only be on it for another 12 months but why cant they keep me on it for good as it clears my skin up even if i do get poorly more with it?

Posted Fri 8 Mar 2013 23.13 by cindy (edited Wed 19 Mar 2014 00.35 by Owe77)

Hi AprilLeckenby, iv only been on ciclosporin for 4 months after been really poorly with 45% coverage of P. although ciclosporin has got rid of the P i cant wait to come off it because its not doing me any good apart from being P free. The side effects im experiencing are awful, from excess hair growth, gum growth, constantly feeling tired the list is endless, its not a good drug to be on for any length of time you must think of your overall health too. Having P is awful but having kidney failure from taking ciclosporin for a long time is worse. It is nice being P free but think of the long term effects on the body too. best of luck

Posted Tue 19 Mar 2013 12.32 by saintsfan (edited Sat 14 Dec 2013 23.21 by saintsfan)

have posted elsewhere on site too but really worried about how long people are being kept on ciclosporin for. Please will anyone who is on it for more than a few months check with their dr about alternative or give the team at head office a call to talk about it.

Posted Fri 7 Oct 2016 17.42 by bexxy

I have been on it for 12 years !!!

Posted Sat 8 Oct 2016 10.59 by ariadni81
legs, elbows, head

I'm on it for 5 years now but trying not to use it the whole time just before the summer , during winter I try not to cause it's not good for the overall health as I have been reading....

Posted Sat 8 Oct 2016 20.10 by rob2526
I've had psoriasis since I was 7 years old, I'm now 54. I'm very rarely free of psoriasis

I used ciclosporin for two weeks 150mg twice a day and after 2 weeks took really ill with flu like symptoms, sore throat, really bad headaches, high temperature mostly during the night, I stopped using the ciclosporin almost immediately so I could concentrate on getting better, which I did after two courses of anti=biotics and painkillers, but it took almost 2 weeks for me to get better. The psoriasis has returned but i'm controlling it with coal tar 10% cream. Not sure I want to take any more ciclosporin.

Posted Sun 9 Oct 2016 08.04 by bexxy

Rob2526 Are you sure your symptoms are related to ciclosporin ? Given a chance it really does clear your skin. Maybe try one more time and see if you get any illness again ? I have been on ot 12 years and have never found it weakens my immune system. Your dose is higher than mine, I know its based on weight, maybe the dose is too high ? x

Posted Mon 10 Oct 2016 00.44 by rob2526
I've had psoriasis since I was 7 years old, I'm now 54. I'm very rarely free of psoriasis

Thanks bexxy, i'm back at hospital on weds so will see what doctor says then, i'm not ruling out using ciclosporin as the results with the psoriasis were good, but it left me really worried about my general health and my ability to fight off infections.

Posted Mon 10 Oct 2016 08.38 by bexxy

Hi Rob2526, yes its definitely worth speaking to your doctor about. I remember when I started taking it, I was paranoid about getting an infection. Its a natural worry as its not a drug to be taken lightly. A nurse at the hospital when I started it said it may well shorten my life as you are more likely to get certain cancers, but now I think I would rather enjoy my life and be P free than be miserable. I just had a 3 week break from ciclosporin and my skin is horrendous, so to me its worth the risk, but im lucky i have never had any side effects. Just the odd liver profile scare. As we get older the risks are higher and obviously our bodies have more wear and tear so I never drink alcohol as i dont want any strain on my liver. Good luck with your appointment and i hope they can help you either way. Its a big thing and needs lots of thought. Hugs x

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