Help needed for Ciclosporin

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Posted Sat 18 Feb 2017 09.43 by Holly1
Has psoriasis since 2001

Hello, I'm considering going on Ciclosporin. I just wanted to know a bit more from those that have experience of this? - how quickly did your psoriasis clear and did cleared completely, no flakes or redness? - once off how quickly and severely did it return? - can you come off of Ciclosporin as and when you want? - how often are your hospital appointments for check ups? - are side affects bad? I'm hearing some people say they wouldn't take it as they suffered with bad side affects. Many thanks :)

Posted Wed 22 Feb 2017 12.05 by EQ

Hello Holly, I am currently on Ciclosporin, started my course 5 weeks ago and currently my skin is completely clear from plaques, scales and redness. It's like living a new life again! Currently I haven't experienced any side effects but this may be due to early days on the medication. I do have a hospital check up in 8 weeks with the first 4 weeks having a blood test and blood pressure test weekly, then for the 2nd month fortnightly. I'm not sure what happens after the second month at the moment but will keep you informed. I think the best thing to do is try it and if you don't work well on it there is always another medication the hospital can look in to trying with you! Good luck.

Posted Wed 22 Feb 2017 20.53 by Holly1
Has psoriasis since 2001

Hello eq! Thank you so much for your response it's so good to hear your treatment is working so well and symptom free. I just can't imagine being psoriasis free so can completely imagine when it happens it's like having a new life again. I'm so excited to try this I just hope I have as good an outcome as you. That's really interesting to hear about the appointment side too as I had no idea how often this would be. Would really appreciate any more info for the months ahead as and when it happens :) Could I ask when you were offered ciclosporin how long was it till you took your first dose from accepting the treatment? Can you tell I'm eager to get started he he Thanks again :)

Posted Sun 26 Feb 2017 13.40 by Roland

I am just about to start on Cyclosporin and am greatly encouraged by your post! I have had Psoriasis for nearly 40 years and it is now the worst it has ever been. It has just ruined a two week cruise in the Caribbean! I will report back on this thread when I start my treatment.

Posted Sun 26 Feb 2017 15.23 by Holly1
Has psoriasis since 2001

Hi Roland would be great to see how you get on! Could I ask what happens from agreeing to taking this medication to actually taking it? Do you have to go for tests first or do you just start to asking this straight away then go for tests? Also how long is it till you can start taking the medication from agreeing to taking this treatment? Many thanks

Posted Sun 26 Feb 2017 20.53 by EQ

I was seen at the hospital at the start of January and was prescribed the medication whilst I was there so I decided to pick it up from the hospital pharmacy before leaving. Unfortunately I have a phobia of swallowing tablets and they were just a little too big for me to take, I phoned the hospital immediately and they sent a prescription the same day to my home address and started the Solution version within just over a week! Thankfully they were really helpful and understanding. Before leaving with the prescription they only took a blood pressure test from me as I had already been having my bloods done in the last month from coming off previous medication and having problems with that so they might do a blood test as well but don't quote me on that! Any more info just ask and I'll help where I can, other than that I hope you both have good results and no side effects and enjoy being P free for a while!!

Posted Mon 6 Mar 2017 23.20 by Roland

Started Ciclosporin today! 2 x 100mg capsules per day. I have to go back in two weeks for a reviewand have a blood test before I go. I will report back on this post how I get on.

Posted Wed 8 Mar 2017 10.48 by Roland

Two days in and no side effects yet nor improvement! How long is it before you notice side effects or improvement? I finished taking Acetretin about two weeks ago and have noticed a lot more scalyness so at least it seems to have been keeping that in check.

Posted Wed 8 Mar 2017 11.03 by Holly1
Has psoriasis since 2001

Hi Roland glad to hear your not having side affects so far! Iv got my dermatology appointment next week and hoping to be put on this then. Will be interested to know the answer of your question about when side affects start if they are too. Did you have to have any tests or anything before starting on cyclosporin? I'm hoping that I can start taking this on wednesday if they give this to me my skin is so bad now.

Posted Wed 8 Mar 2017 11.12 by Roland

I had to have a blood test before starting the medication and will have another in two weeks before my review. If everything is OK it will then be a month before another blood test and review after that I don't know.

Posted Wed 8 Mar 2017 11.25 by Holly1
Has psoriasis since 2001

Ah that's good to know did you have the blood test the same day as your appointment and how long after your test was you given the medication?

Posted Wed 8 Mar 2017 12.02 by Roland

I had the blood test about four days before my appointment with the dermatologist.

Posted Thu 9 Mar 2017 13.29 by Roland

Three and a half days in to my treatment and I think I am seeing my first side effects! It is difficult to describe but the best way to describe it would be that my fingers feel like I have been out in the cold for too long. No improvement in the Psoriasis yet!

Posted Sat 11 Mar 2017 09.51 by DanielC
Had psoriasis since I was 17, now 50+

Hi Roland/Holly Tingling fingers was a common side effect with me, I loved ciclosporin because it cleared me within about 4-6 weeks, it was the first time in about 20 years that I had been clear (used it twice) but had to stop both times because of raised blood pressure. Currently on Otezla (apremilast) which started well but stopped working after about 6 months now been given ok to use secukinumab, we'll see how that goes. Good luck to both of you, Daniel

Posted Tue 14 Mar 2017 12.05 by Holly1
Has psoriasis since 2001

Hope your getting on ok Roland how are your fingers? My appointment is with the dermatologist tomorrow! Two years ago I was offered ciclosporin but didn't take it as I wasn't that bad, so I will be asking if I can go on this as I'm really bad now.. I just really hope they let me go on this and I get to take it soon I'm so fed up with my psoriasis would just love a break from it. Feeling a bit anxious about my appointment now

Posted Wed 15 Mar 2017 10.10 by Holly1
Has psoriasis since 2001

I'm absolutely gutted, getting ready for my appointment and I get a call to say there is no clinic today I'm so upset! They are looking to get me an appointment soon but I was desperate for today's appointment :(

1 Posted Wed 15 Mar 2017 13.57 by Giacy2009

I started cyclosporine 3 - 4 weeks ago, I can see a small improvements in some of my affected areas but nothing in others, side effects for me so far have been rough, headaches, stomach aches, cold burning fingers, dizziness and losing focus on things easily. I want to continue on the meds though as methotrexate calmed it down but never cleared it really. Going to the dermy today to see how my bloods and blood pressure are looking.

2 Posted Wed 15 Mar 2017 18.47 by Roland

Ten days now and only occasional tingling in the fingers, I noticed something strange yesterday, not sure if it is related to the treatment. One of my fingers kept getting stuck at an angle, no pain just couldn't move it without pushing it back into place then it was OK. I think it was muscle related not joint but don't know, very odd!

Posted Sun 19 Mar 2017 22.36 by Roland

Been taking Ciclosporin for two weeks now and am starting to see a slight improvement with a reduction of the redness. Side effects are limited to the occasional tingling of the fingers. I had a blood test on Friday and a review with the Dermatologist on Wednesday. So far so good!

Posted Sun 19 Mar 2017 22.46 by Holly1
Has psoriasis since 2001

Hi Roland, Sounds like it's going well for you! My appointment got re arranged for this Tuesday i can't wait for it now! Glad to hear your having an improvement already! Do you still have scaling and itching? Thank you for your posts good to hear how you are getting on :)
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