Ciclosporin ? Does it work ?

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Ciclosporin ? Does it work ?

Posted by Ruthie on 5th May 2012 12:05AM

Hi
I've had P for 20+ years and recently found out that I've been massively overtreated with steroid creams. I now have cushings syndrome and have been advised to take ciclosporin (apologies, have no idea how it's spelt) and am concerned because it seems to be a huge step from a skin disorder into the realms of blood tests/hospital appointments etc etc. Does it work and is it worth it? Thanks

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  • hi ive had p for ten years, and…

    Posted by amanda1maud on 17th July 2012 03:07PM

    hi ive had p for ten years, and the docs at the hospital sugested ciclosporin, ive been taking it for only 8 days and have seen a dramatic improvment in my skin,no itching,my skin clearing every where and as of yet only side effect has been some pins and needles in my arms and some tiredness,i am very pleased with the results at the moment, just hope it keeps working as well, i have been offered a place on a drug trail programme with the hospital to start in november, will let u know how i get on.

  • Yes, it worked absolute wonders for me. My…

    Posted by rach2101 on 19th September 2012 07:09PM

    Yes, it worked absolute wonders for me. My psoriasis was very bad and I had tried all the creams/steoid ontments etc and also had a few yeas worth of phototherapy. Since starting cyclosplorin 8months ago I haven't had any on my body and my psoriasis on my scalp is no longer itchy. It is a bit of a pain the travelling to hospital check ups and blood tests etc and there are a few side effects of the tablets which aren't too great. However, my psoriasis has never been under so much control and has given me so much more confidence in myself.

    Hope this helps :)

  • Ciclosporin worked wonders for me for many years,…

    Posted by andrewb on 5th October 2012 09:10PM

    Ciclosporin worked wonders for me for many years, until side effects meant i had to come off it.GOOD LUCK hope all is well

  • Think I spoke too soon. After saying how…

    Posted by rach2101 on 8th December 2012 06:12PM

    Think I spoke too soon. After saying how great the ciclosplorin was for me, I have had to bring myself off them due to side effects. Psoriasis is back and came back very quickly. Such a pain :(

  • After reading all these comments and posts i…

    Posted by Nick78 on 14th February 2014 01:02AM

    After reading all these comments and posts i am feeling confident about starting Cyclosporin on Monday. Not to sure about the side affects but if it clears the Psoriasis it will be worth it ;-)

  • I had very positive results to start with…

    Posted by MattL on 14th February 2014 04:02PM

    I had very positive results to start with using Neoral (ciclosporin). But the side effects did get the better of me after about 8 months.

    I found that different dosage levels had separate side effects.

    For example, I started on 250mg a day, and that gave me really bad stomach issues after a while (I won't elaborate).

    They moved me up to 300mg a day and the stomach issues stopped immediately, but then I started to get cramps in my legs that would last for days - I could hardly walk.

    I'm currently on 200mg a day. No stomach issues, no cramps, but I'm covered in big red spots ll over my face. (takes me back to my youth)

    So I'm taking this lower dose whilst I move over to using methotrexate, but at only 200mg a day my P has come back with avengeance. The methotrexate can take a few months to start working.

    It's worth a try... even with all the issues I had, for the first time in 25 years, I felt great! Some people don't have any side effects it seems - so good luck.

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