Ciclosporin? Does it work?

Posted Sat 5 May 2012 00.55 by Ruthie
20+ years of near total coverage and associated problems and now Cushings Syndrome because of misstreatment

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

1 Posted Tue 17 Jul 2012 15.17 by amanda1maud (edited Wed 19 Mar 2014 00.35 by Bastawi)
my skin is bad scored 19.9 by the hospital, have lost alot of my confidence

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.

1 Posted Wed 19 Sep 2012 19.51 by rach2101 (edited Mon 21 Jul 2014 13.09 by pb)
I have had it on my scalp since I was 7 and the rest of my body since I was 14. Been under the hospitals care sice 14 - thats nearly 8 years

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 :)

1 Posted Fri 5 Oct 2012 21.42 by andrewb
21 years of psoriasis most treatments not effective currently on methotrexate injection at last very good control, hospitalized three times

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

Posted Sat 8 Dec 2012 18.38 by rach2101 (edited Mon 21 Jul 2014 13.09 by pb)
I have had it on my scalp since I was 7 and the rest of my body since I was 14. Been under the hospitals care sice 14 - thats nearly 8 years

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 :(

Posted Fri 14 Feb 2014 01.27 by Nick78
i have had Psoriasis for the last 20 years, i am now about to start Cyclosporin treatment

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 ;-)

1 Posted Fri 14 Feb 2014 16.44 by MattL (edited Mon 21 Jul 2014 13.09 by TimA)

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.

Posted Sun 18 May 2014 12.38 by Laura84xx
I have had severe guttate psoriasis for the past 4 years. During that time i have had a tonsilectomy, been admitted to hospital for 9 days f

I have also used cyclosporin in the past and i did find it brilliant for my skin, however long term affects were excessive hair growth, tiredness and feeling away with the fairies. Ive just had a flare up and am waiting for light therapy again :(

Posted Fri 23 Jan 2015 10.23 by lucykavanagh21
I have had psoriasis since I was six months old but wasn't diagnosed until I was 10 years old, due to misdiagnosis. I have been trying to co

I know this is an older post but I thought I'd add my experience. I was given Ciclosporin at 16 as any other treatments (diet, creams, ointments, PUVA) hadn't worked. You get used to the blood tests and it just shows that psoriasis isn't just a disorder of the skin. The taste of the tablet is disgusting but it is worth it. I was on Ciclosporin for about two years and my skin was completely clear and my confidence was slowly but surely coming back. That was until the side effects kicked in. About three months into the treatment, I kept getting tingling in my hands and feet which also made them more sensitive to hot and cold temperatures. When I told my dermatologist, he just said he'll keep an eye on it. As the months went on, my skin was still clear but the side effects were getting worse... I was getting really bad headaches and stomach cramps. It wasn't until I got to the point where I was being sick pretty much every morning, straight after I took my tablets that I was taken off them. Within two weeks the Psoriasis came back with a vengance! :( It is a pain but to be honest, the proccess of clear skin to flare-up will be repetitive with a majority of psoriasis treatments. Even though it wasn't a long term treatment for me, doesn't mean that it won't for someone else. People react differently to medication.

Posted Mon 30 Mar 2015 13.10 by EllaMBella

Hey! I started the tablets back in sept. My skin cleared up very quickly. I am currently finished with them and after two weeks my skin has flared up big time. Can't win. I don't have my dermo appointment until the end of April. I don't know what to do :(

Posted Thu 10 Jan 2019 23.06 by Dolly123

I know this is a long shot for a reply, but could someone please tell me what side effects you experience? I'm feeling a slight tightness in my chest and wrist I took my tablet at 10 this morning is this normal?? I'm rining the hospital tomorrow but till then does it sound like I'm having an slight allergic reaction?

Posted Sat 12 Jan 2019 10.53 by Dolly123

How long did it take for your psoriasis to clear? My skin feels soft (No scales) but still have the red patches on my skin where it was. Would these fade??

To take part, sign in or register with us