Severe enough for ciclosporin?

Hi I am on week 4 of a six week course of Ciclosporin as the topical treatments were not very successful. My skin is better but my scalp is much the same. I have days with no itching but have bouts in places most days. My consultant thinks I am doing well but I have days when I feel quite unwell. For me it’s certainly not a cure all but worth a try but make sure you have all the information you can get. Feel free to ask any questions.

For me, cyclosporin works. But there are side affects and when I came off it. It all returned with a vengeance....also I'm not sure of the kidneys handling this medication..

Thanks NannyJanny, sorry to hear you are not feeling well. If you don’t mind me asking - how severe was your paoraisis before you decided to take this medication? How severe are the side effects you’ve had? Thanks again

Hi my side effects vary each day and today is a good day. My psoriasis was about 70% and the itching almost drove me insane. I am not using any topical meds at the moment and my skin is as good as its been for ages but i think as soon as the ciclosporin course is finished it will return . Obviously i hope not but as i said before, i dont think its a miaracle cure. I understand that you can take it for up to a year but my course is supposed to shock my immune sysytem back to normal. I am not keen to continue on drugs but dread the thought of going back to the way i was . I have only been suffering from psoriasis since my dad passed away lasy July and hope that my skin may return to normal. well see. good luck

Im not sure about ciclosporin, lots of side affects...plus it comes back anyway...sometimes with a vengeance.

Really sorry to hear that NannyJanny - thankyou for sharing your experience. Clearskinpls- do you mind me asking what kind of side effects you’ve had? And how severe was your paoraisis before you began taking this drug? Thanks again

Sure, first week...amazing results....3 rd week gum growth, muscle pains. 4th week severe muscle pain ....fatigue..like you cant get out of bed.....thats when I came off the medication....and then.... all psoriasis back....plus weekly blood tests during the medication showed concerning raised kidney function....I dont need that so I finished the cylosporin asap

However everyone is different

But remember cyclosporin is a very strong medication, used for transplant patients and will affect immunity but not in a way that affects your body's defence....too much

I have fortnightly blood tests and see a dermatologist every 3 weeks which is very expensiveas i have had to wait 9 months for an NHS appontment, am on a low dose which means that the improve has built up over the weeks and the side effects have improved over the weeks. I keep a record of my blood pressure which went up but is now steady. No kidney problems . I guess everyone is different and you have to weigh up the prose on cons. For me it has been worth it if only for a respite. Good luck

Hi Ljw, I have been suffering from P for nearly 20 years (I'm 34 now) and after years of the Dermatologist trying to get me to take Cyclosporin I have finally relented after one of the worst break outs I have had. Whilst the coverage didn't really change (I'm about 60% covered) the itching changed from annoying but manageable to unbearable all day and it was waking me up at night. Like you I had reservations over this drug due to the side effects and the fact that any remission would be temporary, My mindset has always been "why take something that could do this much harm for a few months of clear skin?!" I have always grinned and bared the pain/ itching but late last year was too much for me. After some testing and delays I started the course yesterday so fingers crossed I will be one of the luckier ones and the side effects will be minimal. In response to your question, I think only you can answer that as you have to weigh up the pros and the cons but it sounds like you are taking a sensible approach to your decision making process. If it helps, I have been following another good thread on here which I would recommend. It's called "Help needed for cyclosporine". It gives many peoples thoughts and experiences which may help you decide, It helped me decide to take the plunge! The motivator for me was the pain/ itching becoming too much to handle however I appreciate it is different for others. I would also say the bit I have struggled most with P is the way it makes you feel on the inside. I hope with summer a few months away and the cyclosporine I may be able to enjoy it for a change and this will build my body confidence so that's definitely a plus for me. I wish you all the best with your deliberations and whatever course of action you take