Help needed for Ciclosporin

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Posted Thu 24 Aug 2017 17.16 by ClearskinPls
Since 2001, tried uvb and creams

Thats great...so much better than going to the hospital. ....ive done uvb 3 times over 8 years and results were good. But I think my skin just doesn't like it anymore so I stopped it in January...but the nurse did say if you uvb its very important to moisturise afterwards. . Good luck!

Posted Thu 24 Aug 2017 18.02 by DodgeWC51

I was also told don't forget goggles, and being male there are ..certain..- other portions -must be covered during treatment. And who says UV treatment is straight forward? One thing about it in winter though, does give the Seritionin a boost, so should make you much happier, whilst the rest of us are cold and miserable> :-)

Posted Wed 13 Sep 2017 05.07 by DodgeWC51

Just an update folks. Been off the Cyclosporin for about 6 weeks now. Good and bad. The P as flared up badly. Lots of small red spots , like a bad case of measels. scaling came up , but that now seems to be calming down. So a bit more wait and see. Due to see Dermatologist next month. Getting a bit fed up as it looks like any alterntive treatment will effect life and work . Ho hum, we will see.

Posted Wed 13 Sep 2017 05.29 by ClearskinPls
Since 2001, tried uvb and creams

Hey D Im still on Ciclosporin with excellent results for another few weeks...we both talked about it before that once your off it the body gets back to attacking the skin...but maybe the Ciclo has given your body a good chance to stablelise and the P will be less and more manageable? Are you itching and more importantly are you sctatching ? rgds T

Posted Wed 13 Sep 2017 07.58 by Holly1
Has psoriasis since 2001

Dodgewc51 glad it's now calming down for you have you been using anything whilst you have been off cyclosporin? I came off of mine yesterday very nervous as to how my skin is now going to react. My next appointment is November so not too long to wait. Let us know how you get on at your appointment next month

Posted Wed 13 Sep 2017 21.00 by DodgeWC51

Hey guys. Not to itchy fortunatley. The old 50/50 paraffin ointment is helping a lotTrouble is as you know, it's impossible to predict from one day to the next how your skin will react. Today is less red but more scale. I've about a month till my next appointment but can call up if the situation goes critical. Currently annoying, but, not life threatening. So the Cyclosporin did as T suggests, let every thing rest and recuperate. So now hopefully will reach equilibrium. Been 10 months since this all started, so no miracle cure.

Posted Thu 14 Sep 2017 09.26 by Roland

Not posted an update for a while so thought I would let everyone know how it was going. I started on Ciclosporin in February just after my psoriasis had spoilt a Caribbean cruise (we visited some of the places we have seen flattened on the telly). I had been on Methatrexate but that made my P worse, I had also been using Dovobet for years. I started to see some improvement after about a month and after two months my consultant suggested I stop using Dovobet. Since then my P has practically cleared! From about 75% coverage of my arms, legs, buttocks and also large patches on my back and stomach not to mention the genital psoriasis I now only have the odd small patch appear now and then but nothing permanent. I have been very lucky with the side effects that I can definitely attribute to Ciclosporin with only some tingling in the hands.

Posted Sat 4 Nov 2017 23.00 by DodgeWC51

Hi Folks, been while since I posted, but. Came of fCyclosporin a couple of months ago, to see if Erythroderma would stabilise. Short answer No. After a week or so from the last dose, bloody hell! It just went crazy. So I saw the Dermitologist a couple of weeks back. Straight back on large dose of Cyclosporin, which has now settled things. I'm a bit fed up as it looks like for the foreseeable future I'll have to take powerful drugs, hoping to go over to Methtraxate for long term in next couple of weeks, Not the outcome I wanted, but the alternative is is unlivable with.

Posted Sun 5 Nov 2017 00.12 by Holly1
Has psoriasis since 2001

Sorry to hear this dodgewc51! And just after a week as well so frustrating. Glad that it's manage to settle down a bit now though even though it's not the outcome you would have wanted. Out of interest as I wasn't offered methraxate is this better for long term use? Iv been off ciclosporin for nearly 2 months and it's slowly coming back. I have a few size 5p patches on my shoulders back and a couple on my legs, which is better than I expected. But it's really come back with a vengeance on my scalp and face 😏 Right where it's most visible of course! Need to go pharmacy this week and get the scalp soloution as the shampoo is doing nothing at all. Does anyone know what this is called? It's a bottle that had a nozzle so you could apply a clear solution to your scalp 🤔

Posted Sun 5 Nov 2017 05.16 by DodgeWC51

Hi Holly, One thing I found did help was the 50/50 paraffin ointment, does mean you go round imatating a candle, but it did keep some of the itch at bay and was very effective when used lightly on my face.. My pharmasisit also recommended Loratatdine, an anti histiamine, one tablet a day, that helped if the itching got really bad. I took it in the evening, it id help me sleep. The dermatologist is going to introduce Methatraxate hopefully in the next couple of weeks now my skin has settled. Her aim to try and get me on Biological Methatraxate. That invloves an injection once a month, but requires a number of pre tests including a TB blood test preceded by oral treatment. Apparently the side effects of biological injections are none, and the incovinence minimal, so that's what I'm hoping for.

Posted Thu 9 Nov 2017 15.36 by BGFC

Hi, i have took ciclosporine 3 times over the last 7 years, I find it very effective and i have had little side effects. The first time i had eryhtro psoriasis and was hospitalized for several weeks. They gave me ciclo with a dosage of 3.0mg/kg Bdy Weight/ twice daily. This is a pretty low dose from what i gather. I stayed on it for 6 months with no rebound when i came off. 3 years later i had another outbreak and used ciclo with the same dosage for 3 months, this cleared me again with no rebound. 3 years later i had another bad breakout with 90% coverage, at this stage i was in a different country and doctors were wary of putting me on it. i was put back on it starting at low doses for 2 months. The low dose did not give me any relief, they then put me upto the 3.0mg x bdy weight/2 daily. This give me 99% clearance again. I have stayed in this dose for the last two months, i am now in the process of reducing the dose, i am back down to 2.2mg x bdy weight/2 daily with little rebound. I am hoping within the next few weeks to drop back down to 1.0mg x bdy weight/2 daily. I am crossing my fingers that i get the same results as previous experiences.

Posted Thu 9 Nov 2017 17.11 by DodgeWC51

I've been back on it for 3 weeks now. The diffrence is really life changing. Skin more or less normal, a great relief. Beter stil very litle in the way of side effects, body must be used to it. So next couple of weeks see what the dermitoligist recommends . The ldeal for me sounds like Biological Methatraxate, , the bones and joints are getting a bit weary, so hopefully that will improve as well.

Posted Fri 10 Nov 2017 00.45 by Vic90

So glad I've found this site I'm currently waiting to see the hospital next week and been talking through treatments with my doctor and I'm asking for ciclosporin I've read loads and spoken to my doctor every month for last year and they agree this may be helpful route to take, did anyone out right ask dermatologist for this or was it suggested by them any help appreciated I've had enough and lost too much hair now completely on show even bold patches not enough hair to hide it anymore,

Posted Fri 10 Nov 2017 04.28 by DodgeWC51

Welcome in. It isn't an overnight miracle, you'll need a few weeks to see an improvement but it does work. For me it was suggested as what amounted to Emergency treatment.

Posted Fri 10 Nov 2017 08.26 by Vic90

I'm not expecting an overnight miracle I just wanna take my kids swimming again and not be upset with having to hide my hair, i dont want to have to move my partners hands from my hair cause im scared he will feel it and feel horrible i don't wanna have to explain to everyone I meet what wrong cause I have large raised scales right at the front of my hair and bald patches of hair I'm a young female and my family don't undestand, I've wasted so much money this year trying things people said worked for them I just want some improvement to at least be able to hide it

Posted Fri 10 Nov 2017 17.19 by DodgeWC51

You should definietly get an improvement in your scalp. As for the hair, itself, a good hairdresser should be able to advise. The general complexion improves as well Be realistic though, allow a month to six weeks for major improvements, though you should notice a diffrerence after a couple of weeks.

Posted Mon 13 Nov 2017 18.48 by Smiler40

Hi all, newbie to the forum and just wanted to say hello and thanks for all the useful info on this thread. Just about to start ciclosporin for ppp (palmoplantar pustulosis) and feeling a bit nervous again as have just stopped acitretin due to it being ineffective and tried methotrexate in past, also ineffective, and I'm a bit fed up. Crossing everything that this will give me some relief and let me walk again as at moment I'm stumbling about on tiptoes and have very poor quality of life. Thanks again for info. Hope you're all doing OK.

Posted Mon 13 Nov 2017 19.01 by Roland

Before going on Ciclosporin I was convinced that I would never be free from Psoriasis after suffering for 40 years. I am now 99.9% clear (apart from my nails) and have booked a holiday in Cape Verde for January because my dermatologist says I can only stay on it for a year and that runs out in February. I am dreading coming off Ciclosporin!

Posted Mon 13 Nov 2017 19.39 by Smiler40

Just heard about a woman who's been on it for 18 years! According to her, as long as kidney function is OK, it's negotiable.

Posted Sun 3 Dec 2017 10.17 by Idy
Phototherapy, methotrexate, ciclosporin and stelara afficionado

I'm now at the end of my 5th week on the maximum dose (for my weight) of Ciclosporin. In the first 3 weeks I didn't notice any changes, but then very rapidly the psoriasis started to disappear, along with the soreness and itching. Around 70% of my skin from neck to ankles was affected prior to this, and was so sore and itchy that I wasn't able to go to work for three months. I'm now back at work, my skin feels fine (although 'spiky' to the touch) and I only feel the need to moisturise once a day rather than four times.
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