Your Ciclosporin stories.... support needed!

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Posted Fri 21 Sep 2018 00.54 by Xtess_mpx

It's so strange how others react differently to cyclosporin. I went on cyclosporin for 6weeks and was extremely ill and bed ridden because of the effects. My psoriasis spread all over my scalp and spread in loads of patches up my legs, although before I only had two patches on each leg and over the scalp. I'm possibly thinking it doesnt react well because I'm a teen and hormones I'm not sure. However cyclosporine has ruined my psoriasis and coming off it made it spread even worse! Does any one have any advise on natural or dieting remedies? It's never been this bad in the six years I have had it :( Thanks Tess

Posted Fri 21 Sep 2018 05.18 by Cazzy27

Hi Tess. Have you read the forum about blueberries. It makes very interesting and positive reading. I have PPP and I tried it but it didn't work for me. Please have a read and see what you think. Hope this helps. Carole

Posted Fri 21 Sep 2018 10.21 by Xtess_mpx

Ill make sure to read the blueberries forum, I have blueberries most days it makes a some difference, however the cyclospprin has made it extra stubborn unfortunately. Ill go and read the blueberries forum Thanks Tess

Posted Fri 21 Sep 2018 10.31 by Cazzy27

Hi. I took a break from the Cyclosporin for four weeks just to try the blueberries and to give me a rest from the meds. Not sure that the two go together well but it was definitely worth a try. Carole

Posted Mon 5 Aug 2024 11.28 by rapture83

Came across this one online but was back in 2018 so not sure if some posters will be able to reply now. I've started this today, I've to take 150ml twice a day, booked in for a check up in 3 weeks with my dermo, I imagine for bloods also. I've been told I will be on this for a few months and if there is no sign of improvement I will be moved into bio injections. I think this is the last thing I can try as I've been on everything else with no success so will see what happens. It's been a long road to get to bio injections, 5 years all in of trying everything else so delighted I'm almost at that stage now but here is hoping I get some sort of reaction to this med before then.

Posted Wed 14 Aug 2024 13.52 by Cazzy27

Hi rapture83. I was fine on Cyclosporin but it started to affect my kidney. As I only have one I couldn't risk staying on it. I'm now on Acitretin but only 10mg a day so a very low dose. I've been on this for about 4 years. I would love to hear the results if you get to have the bio injections as I might be able to go down that route but unsure of the side effects of it.

Posted Fri 30 Aug 2024 06.22 by rapture83 (edited Fri 30 Aug 2024 06.38 by rapture83)

Hi there, My story is that I’m now in my 3rd week of this med and I am just about completely cleared for the first time in 10 years. I have gutatte and some plaque, it was mainly on my forearms, everywhere on legs and feet! I’ve went thru every single med from the dermo, Cyclo is my fast thing before I’m moved into bio injections and this is working amazingly. I’m on 150ml twice a day. Side effects - So far it’s been pretty easy, when I take my dose I get a bit of nausea for about 1 hour max then it’s gone, some hot flushes for an hour or 2, the only other thing I get is tingling in my finger tips and sole of feet for a couple of hours, mainly noticeable in a hot shower but bar that half the time I don’t even notice it or I’m maybe used to it now. I’m still living my normal life, still being social at weekend with some alcohol, had my bloods taken start of this week for liver & kidneys and results are fine, blood pressure fine too. I’ve been told I’ll have them again in 2 weeks time and if that comes back fine I’ll most likely stay on this med for at least 6 months, possibly a bit more. I’m delighted with the results, the only stubborn bits are my feet but patches not red, just looks pale pink. No complaints for me so far with the med! Hope it works for others! Last note - Worst med I’ve been on is Methotrexate, horrific side affects :-(

Posted Fri 30 Aug 2024 06.41 by rapture83

I recorded a video last week on every med and thing over tried with P right until now, results/side effects I’ve went thru, if anyone would like to watch it let me know, I just done it off the cuff in case it could help anyone, thanks!

Posted Fri 30 Aug 2024 07.19 by Elly

Hi all, original poster here! Gosh it's been a while since I checked in. Life's been crazy. Anyway little update on my journey. Last post was about starting Methotrexate...... well that was short lived as it began to affect my liver. Was given another injection to try ( can't remember name only that it began with H but I do remember it making everything worse and I was back to square one with my psoriasis) Anyways taking into account some other health issues that decided to join in it was a case of getting back control and finding something that would mix in with the other medication I am now on for life. Tildrakazimulab.... a bio injection every 12 weeks (I have a double dose) it's been wonderful! My skin has been 95% clear for the longest time I can ever remember. I do begin to feel itchy towards the end of the 12 week cycle and my joints begin to stiffen up more but hey 136 weeks in and I'm confident I've got something that I can stay on for a sustained period with no side affects. It really is a rollercoaster journey and crazy how some thing work well for others and just don't for some.

Posted Tue 10 Sep 2024 10.09 by rapture83

Hi all, Update from me on this med, I am on week 5 of taking 150ml twice a day and I am currently about 95% completely clear!! The only stubborn bits are the top of my feet but they are fading away as the weeks go on. This is the first time in 10 years I have been anywhere close to this sort of clearance. I have not used my Enstillar Foam also for 4 weeks now as there has simply been no need for it at all. Side Efffects - Pretty much nothing now, first few weeks I felt slightly sick for an hour after taking it and my fingers tips and soles of feet would tingle for an hour or 2 but now I pretty much get nothing at all. Bloods - Last round of bloods for kidneys and liver came back fine, also blood pressure. I have 2nd round of this on Friday, if all is fine I should be fine to continue with med until I'm told not to from the derm.

Posted Wed 11 Sep 2024 12.20 by Acheyflakeyheart

Hi All, Last week I was switched from methotrexate to ciclosporin 125mg x 2 times a day. Due to my liver function being impacted by methotrexate. I'm only on day five and already seeing some improvement on stubborn parts of my psoriasis already which is great! However, I'm in so much body pain. I was diagnosed with fibromyalgia and potential psoriatic arthritis years ago. Methotrexate really seemed to really improve my body pain. Since finishing methotrexate the pain is back with a vengeance. I'm aching constantly and it feels like bone pain. Went to the supermarket yesterday and nearly ended up crying by the time I got home. Anyone else experience this? Could it be related to the meds? I also have endometriosis etc. so hard to tell what's what sometimes, but it's been a marked difference since starting ciclosporin and finishing methotrexate. I am going to persevere and hope it's maybe just the switch over or unrelated and then make a call if this continues in the coming weeks. Any insights / experiences appreciated.

Posted Tue 17 Sep 2024 10.31 by vambrown

Hi. I’m new to this site. I’ve had scalp psoriasis now for about 4 years.i get it on neck, chest and underarms and a few patches on legs. Doc tried everything she could to help but eventually suggested I see a specialist as nothing worked. Been on Enstillar and Cocois for about 3 months and hasn’t helped. Worked initially but comes back quickly. I have lost so much hair which is very depressing. He has now suggested Ciclosporin which I would start mid October. Feel like I have little option as I don’t want to lose any more hair and nothing else has worked. Having seen photos of some peoples psoriasis I kind of feel ciclosporin is quite drastic for just my scalp really. Such a horrible thing to suffer from. Is anyone in a similar situation re mainly scalp and taking Ciclosporin?

Posted Wed 9 Oct 2024 21.28 by potomusotto

I started taking ciclosporin in August to clear scalp, inverse and guttate psoriasis. I was covered probably about 70%, and as a 19 year old that was very uncomfortable and it got to a point where I wouldn't leave my house through fear of judgement. It took just under a year from diagnosis before I was finally taken seriously by my GP and referred to a dermatologist, who instantly put me on ciclosporin. The ciclosporin started working near instantly; I did use Enstilar on my body and coconut oil and Etrivex shampoo on my scalp alongside ciclosporin for the first few weeks which helped a lot, but since then my scalp has been mainly cleared. My skin flares up when I get considerably stressed, but it's managable with Enstilar and constant Zerobase moisturising for a few days. The only problem that I've had with ciclosporin is through the side effects - I'm constantly feeling tired and nauseous, considerably lost my appetite, my periods have completely stopped, I get tingly fingers and feet when temperatures change, and facial spasms when I get stressed. It's difficult sometimes to realise that my psoriasis isn't cured, it's only suppressed. I'm really trying not to get complacent and take my skin for granted whilst it's so clear, as I've been advised that ciclosporin is a short-term medicine and therefore I'm being transferred away from it onto biologics within the next few months.

Posted Sun 27 Oct 2024 13.16 by vambrown

There are a lot of older posts here and I’m interested to know how people have been once they stopped Ciclosporin? I’ve been on it a week so far and not noticed too much difference in my scalp although hair loss is reduced. Has almost cleared a patch on my arm. Early days though
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