Help needed for Ciclosporin

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Posted Sun 19 Mar 2017 23.18 by Holly1
Has psoriasis since 2001

Do you have to stop taking creams like dovobet , silkis etc? When on ciclosporin?

Posted Tue 21 Mar 2017 20.11 by Holly1
Has psoriasis since 2001

So I had my appointment today and the dermatologist has advised I go on ciclosporin, I'm so happy they have agreed, I'm having blood tests this week and got my next appointment Tuesday. Hopefully I can start the treatment next week :) how is everyone doing?

Posted Tue 21 Mar 2017 22.24 by Roland

Holly1 I am still using Dovobet with the Ciclosporin.

Posted Wed 22 Mar 2017 13.28 by Roland

Been for my two weekly review and my cholesterol and potassium are high but I have been given another four weeks medication.

Posted Wed 22 Mar 2017 14.01 by Holly1
Has psoriasis since 2001

Thank you Roland that's good to know I can still potentially take dovobet to. Glad your still able to continue for another 4 weeks! How are your side affects? And how is your psoriasis clearing up?

Posted Fri 24 Mar 2017 15.16 by EQ

So I've currently been on Ciclosporin for around 2 months now and I too get the tingly fingers now and again, more likely when it's cold! There has been a good improvement to my face and ears, little improvement to my scalp as I still have small plaques around my head and minor improvements to my elbows and knees. At the moment I'm not very impressed with it as it doesn't appear to be clearing up anymore but got my derm appointment in 2 weeks so going to discuss with them when I go!

Posted Tue 28 Mar 2017 23.32 by Holly1
Has psoriasis since 2001

I was given ciclosporin today and took my first dose this evening. I'm on 100mg x2 per day, my next appointment is in 5 weeks for more blood tests and I have to have my blood pressure checked twice per week. Was thinking of buying a blood pressure machine and taking my own readings, does anyone do this and have recommendations for a machine? Eq that's a shame it's not working out as you hoped! Hopefully at your next appointment they can do something and give you the results you want. Keep us posted on how you get on

Posted Thu 30 Mar 2017 10.43 by Roland

Three weeks in and still no obvious side effects, some patches seem to be clearing but new patches are still appearing so no net gain apart from the redness/purple has faded a bit.

Posted Thu 30 Mar 2017 20.14 by Holly1
Has psoriasis since 2001

Glad you don't have an side affects Roland!! Shame your getting new patches. How long till your next appointment? I'm two days in and so far just tingly fingers and sometimes if I put my hand in Luke warm water it feels boiling. I'm also using although not every daily diprosilic (not sure on spelling, been on this for a week) so far the scaling seems to have disappeared and isn't coming back yet, the redness isn't looking sore just a paler version. But tonight iv noticed that this is the first time iv had a shower where I haven't been in pain after so I'm happy with that. Love hearing how your all getting on!

Posted Thu 13 Apr 2017 01.01 by Holly1
Has psoriasis since 2001

Hi how is everyone doing? So two weeks in my psoriasis doesn't look angry anymore but it's still noticeable, some patches are fading but not enough just yet. It started off quite quickly with noticing a change but it has slowed down quite a bit, not getting worse but maintaining. Does anyone know if this is normal and whether it will continue to improve? Side affects only seem to be tingly fingers and toes and sometimes water feels like it's boiling hot when it's Luke warm. Other than that I haven't noticed any other side affects.

Posted Fri 14 Apr 2017 08.39 by Roland

Six weeks in and no real side effects but no real improvement either! My skin is not as red or itchy but the psoriasis is still spreading, onto the backs of my hands now!

Posted Wed 19 Apr 2017 23.04 by Roland

Dermatologist is happy that my psoriasis is beginning to clear and has given me another months supply of ciclosporin. He has also taken me of Dovobet and prescribed a new moisturiser called Cetraban, anyone used it?

Posted Thu 20 Apr 2017 17.44 by Blaynster
Sufferer for 8yrs+

Hi there I am just about to start using ciclosporin. Bit nervous about it but having read your comments etc it sounds like its worth trying. My psoriasis has been getting worse and worse and is now just so sore and itchy its unbearable. It's everywhere with new patches appearing all the time. I wanted to try light treatment again but dermatologist thinks this would be better to try. Just waiting to see specialist nurse and do initial blood test then I will start it. Not sure what else to do as have tried so many different creams and lotions and steroids but nothing really helps. I wash with Zerobase and use Zerogel as a moisturiser and use Capsal for my scalp and Betnovate sometimes too but I just hate the comments the dermatologist makes like moisturise 4-5 times a day!!! It's just not possible!! Anyway just wanted to say hi on this post has its all about what I am about to start so your comments are really useful. Thank you

Posted Fri 21 Apr 2017 22.57 by Kirsty

Hi all, I have just come off cyclosporine. I was on it for a year. This was amazing for me. I had the worst flare up I have ever had. I was 80% covered. Within 2 weeks, the psoriasis was clear, left faded red patches, after 3 month they faded. When I was first on this I had weekly blood test for first month, then went every 2 week. Once I reach 6 months it went monthly. All appointments with the dermatologist was every 8 weeks. Only side effects were the cold burning sensation in my fingers and toe when there was a change in temperature, this was most noticeable during bath/showers. After 2 minutes it went back to normal. Warming them gradually help. I am now starting methotrexate, progress is not as good as cyclosporine, and side effects and nice either but I'm hopeful as I adjust to this medication. Hope you find cyclosporine as good as I did.

Posted Sun 23 Apr 2017 09.10 by EQ

Hello Kirsty, I was on Methotrexate before Ciclosporin and it had completely cleared my skin within 1 month, I was about 80% covered from head to toe and was so happy with this treatment. Hopefully, it will start to show improvements soon! I've been on Ciclosporin for 3-4 months now and most of my body has cleared up except for a few patches in my scalp and my elbows have not budged at all. I'm not overly impressed with Ciclosporin as Methotrexate, especially as the dermatologist said I would be clear within 2 weeks. I'm still very happy that most of my psoriasis has cleared up and can finally enjoy things that I had to stop doing. Hope progress for everyone else here has been good!

Posted Thu 18 May 2017 13.01 by neas83

Just starting taking cyclosporine and my first dose of 250mg (1x100mg and 1x150mg) twice a day is killing me!. I literally feel like I'm going to puke, and have terrible indigestion.

Posted Wed 21 Jun 2017 20.38 by Holly1
Has psoriasis since 2001

Hope everyone is doing well on cyclosporine. Was just wondering, my friend just informed me that her son has chicken pox who I was with a few days ago. I had chicken pox as a child. Does anyone know if using ciclosporin you can catch chicken pox even though you have had it?

Posted Sun 2 Jul 2017 18.04 by EmmaG

Hi. I was diagnosed with erythrodermic psoriasis after a lot of dr visits and pain. I've never had psoriasis until 6 months ago and it spread so quick. I was covered EVERYWHERE apart from my face. I've been on ciclosporin(neoral 100mg twice a day) for 2 weeks and there is definite improvement but I'm still quite red/purple especially on my legs. I was wondering how long it took for this to go away? And also did you experience hair loss as mine is falling out loads! But I read 79% of females do experience hair loss and it's mainly in the first month. I haven't came across anyone else with erythrodermic psoriasis and so it's been difficult to find out information.

Posted Tue 4 Jul 2017 08.25 by DodgeWC51

Welcome to a very exclusive club. My doctor told me that about 3% of the population have Psorasis, and about 1 in 300 of that figure will get Erythroderma. . Mine kicked off December 2016, though I've had P since I was a child, it never really been a problem before. 2 weeks is not very long, It took the best part of a month before mine started to improve, though when it did kick in the improvement was dramatic.. The side effects can be wearisome (That is very bowlderised!) but I would say stick with it it is worth it. I'm now starting to come of the stuff, That takes almost as long. The important thing is that is to accept that there is no miracle cure. It's easy to get impatient, and the majority of people do not realise how debilitating it can be. Your body is currently at war with itself., eat well and drink plenty. It will improve.

Posted Wed 5 Jul 2017 03.28 by EmmaG

Thank you for the reply. I've been trying to stay positive and it's improving everyday only I'm still very itchy. When does the itching stop? Whenever I scratch it come up red and spotty.
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