Posted Thu 17 Jun 2021 06.50 by Psoriais101 (edited Thu 17 Jun 2021 06.50 by Psoriais101)
I’ve just started Cyclosporine at 3MG/KG
I’m wondering how long it took others to see any results?
I have 70% body coverage and up until now using enstillar and sun to help but stopped doing so now to see if the tablets work alone. (meant to avoid UVA as well during treatment)
Suffered for 11 years and can’t see any part of my body expect my face at this point, some awful side effects as have IBS too, so was on the toilet all day yesterday but gonna try power though.
Just wanted people’s experiences on how long it took to clear, work at all etc. Also has anyone actually got fully clear from this and the pigmentation/pink skin gone too?
Hi there
It is many years since I took Cyclosporine so I cant actually remember the time scales, but I used to take it every summer and come off it over the winter for about 6 years and I don't remember it taking too long to clear and yes, it cleared completely for me and I had normal skin.
Posted Thu 17 Jun 2021 09.17 by Psoriais101
That’s reassuring Lizziep.
The side effects are pretty bad already but I’ll just carry on as it’s a last option at this point.
If anyone does remember how long it took for them - that’d be great.
I took it for about 9 months. It worked really well and cleared me up after 6 to 7 weeks. I was covered in p at the time, having gone through light therapy and acretin tablets which didn't help much. You can't take cyclosporin for years though as it affects the liver. You will know already about regular blood tests. Hopefully it will work for you. It's not the last option though. I went onto methotrixate afterwards and am going onto biological treatment next week. There are several of them to try and you dermitologist will assess which one suits you best. Good luck.
Posted Thu 17 Jun 2021 16.11 by Steview A P sufferer for over 30 years, through good and bad times.
It was many years ago I took Cyclo but remember it was quick acting and gave good clearance. Not a long term treatment though.
Posted Mon 21 Jun 2021 01.56 by Yacht
One study in 2013 suggested the average time until onset of action (TOA) for cyclosporine and psoriasis is around 6 weeks. In other words, about 1-2 months for it to start working.
Posted Mon 21 Jun 2021 09.39 by AbbieHowarth_
I started Ciclosporin at the beginning of the year and my skin had cleared up within a month, after being on it for 5-6 months now my patches are coming back faster than ever and I keep having a really bad burning sensation in my stomach when I take them. They just don't seem to be working anymore for me. I was amazed at the results when I first started taking them. The only thing that has ever really worked in the long run for me is light therapy.
Posted Mon 21 Jun 2021 14.31 by Moggy1
I am waiting for phototherapy but was told last month it could be 39 months wait 😩
Posted Mon 21 Jun 2021 14.37 by lizziep (edited Mon 21 Jun 2021 15.35 by lizziep)
PUVA worked for me for a while, but the real game changer for me was Skilarence (previously called
Fumaderm) which was a miracle and left me with no psoriasis at all for nearly 20 years. I chose to come off it for COVID and now cant get back to see my dermatologist!
Posted Mon 21 Jun 2021 14.38 by Martinhowie
I have suffered for about 12 years now with psoriasis, I am currently on acitretin tablets 30mg per day, I have used cyclosporin before and as mentioned above it took only a few weeks to be able to notice the treatment working, however again as stated it isnt a long term treatment, and I dont know if it is just me but they stopped working for me also after a while, apparently my body is getting used to all the treatments too quickly and then rejecting them, I am now currently covered in approx 70% of my body maybe more, getting checked for psoritic arthritis and now have more plaques than ever, new ones appearing each and every day, and in constant pain and discomfort....to be completely honest I have never been self conscious before but I now do not want to leave the house as my visable parts of body are covered... however I hope these tablets work for you 🤞👍
Posted Mon 21 Jun 2021 14.59 by Moggy1
Hi Martin
I have been taking acitretin 10mg a day for 8 weeks and showed significant improvement before having my vaccination.
I am only Small dose reflects this.
At first I had dry lips eyes and increased thirst felt a bit achy but nothing to extreme.
The dry lips and eyes and achy feeling have gone still thirsty but the real problem now is my hair it’s like wire wool and nothing is helping also I am not sleeping well and feeling very low.
Don’t know if the low mood is because of the recent flare, the realisation that I have this for life or the medication 💊
Have you had any negative side effects. ?
Posted Mon 21 Jun 2021 15.29 by Martinhowie
Hi @Moggy1, sorry to hear about your side effects, in regards to my side effects I have also got the dry lips, sore/itchy eyes, small patches of hair loss ( due to the placking on my scalp becoming worse), increased joint pain, more smaller plaques have developed all over my body, new developed areas of psoriasis and my groin area and the top of my bottom, aswell as the soles/heels of my feet, fingers and finger tips, very frequent headaches, low mood, fatigue......to be honest I am having a very bad time at the moment.....but I am not sure how much of this qould be classed as side effects to the meds or just the psoriasis itself
Posted Mon 21 Jun 2021 15.39 by Moggy1
Martin I am so sorry to hear you are having such a hard time.
The symptoms you are suffering seem much more extreme then mine but symptoms are very much dose related.
As I am showing some improvement I am happy to keep taking them.
Psoriasis does have an effect on your mood but if you are feeling lower than before it might be worth speaking to a doctor
Very few people find the cure easier than the disease sadly
Take care I hope you start to see some improvement
Posted Mon 21 Jun 2021 15.54 by Martinhowie
Thanks Moggy, I am already seeing my GP in regards to low mood/depression, I am on tablets for that however when I feel like this due to constant flare ups they dont really help much tbh however, I have a very supportive and caring partner, a 7 year old who is relativley good considering the age and a new baby on the way so Life is full of ups and downs, and sometimes we just need to take the bad with the good unfortunately lol, take care of yourself and I hope and pray that you have an easier time of it than me.
Posted Sat 26 Jun 2021 17.48 by Psoriais101
So it has been about 2 weeks.
My skin is peeling very weirdly! Especially in places like my hands where I don’t have psoriasis. As much as I moisturise my skin is so dry!
I also have had so many boils come up, I can’t open one eye my face is so swollen due to a massive boil that’s burnt on my forehead. I feel so run down, I ache everywhere, sit on the toilet 24/7.
Im so sick of it already but it’s try to clear my psoriasis with these and feel like death or just suffer it forever.
Please someone tell me this is worth it :(
Posted Sat 26 Jun 2021 18.37 by lizziep
I think that in your shoes I would feel that
cyclosporine wasn't for me and would try something else. When the cure is worse than the disease, it is time to say enough.
Posted Sun 27 Jun 2021 14.08 by Moggy1
I am sorry to hear you are having such a bad time.
If I was you I would try and get an emergency appointment with your dermatologist or doctor. No one should have to suffer like you are. Please try and get help .
Take are
Posted Thu 17 Jun 2021 06.50 by Psoriais101 (edited Thu 17 Jun 2021 06.50 by Psoriais101)