Help needed for Ciclosporin
Posted Wed 20 Jun 2018 07.34 by DodgeWC51 (edited Wed 20 Jun 2018 07.35 by DodgeWC51)
No, we have all felt like that at some time. Most people don't appreciate is how much the skin actually does, it is a very long list. When it is not functioniong correctly you can feel, or not feel, all sorts of weird things. A few days ago there was a radio piece about the possibility of using 'Drug that can promote hair Growth and cure baldness!' Before the introduction was over I though Cyclosporin. Correct! Didn't know wether to laugh or cry. For us here it is a life changing treatment.
The effets and side effects are diffrent for everyone and I don't know of any way to predict them. You will notice things, the most annoying thing for me wa sthe tingiling lipa, eevry time I drank a cup of tea , to which I'm addictaed, it felt like a fizzy drink. The upside was after a couplke of months my skin was clear. I have now moved to Methotrexate, whic for me is working so far.
Posted Wed 20 Jun 2018 08.02 by Holly1
Has psoriasis since 2001
Hi Scottish girl I had the same thing and sometimes still do. The other day I was so cold I thought il have a warm shower it hurt so bad where it felt like my hand and feet had boiling water poured on them my partner felt the water and said it's hardly warm! I find if I'm hot or cold and go to the other extreme quite quickly this happens.
That doesn't make you sound crazy at all Iv had times like this or where I can't even face the day because of it but for me ciclosporin has helped so much! Last time cleared completely with a few weeks this time Iv had it for 8 weeks and still have some but fingers crossed it completely goes soon, either way I'm notlonger in pain and it has cleared up loads which is a vast improvement. All the best and hope you see results soon!
Posted Wed 20 Jun 2018 23.39 by ScottishGirl
Had psoriasis for 15+ years
Hey holly, sorry I would have replied sooner but it wouldn’t let me, was saying due to spam new users are only allowed to post a couple of times a day or something! Wow! lol. Anyway, I get what you mean about feeling like boiling water is being poured on you. I had a bath last night and my toes went really white and it felt like frostbite or something but it was ok today when I had a shower. That’s great ciclosporin has helped you. I’ve just had my fourth tablet so far and no improvement yet but I’ll be patient! Something strange happened last night while in bed though. I was feeling really agitated and scared and I felt like i was hallucinating seeing someone standing at my room door then seeing a pair of eyes on the wardrobe door staring at me. Also lots of blue, white and red lights flashing. The least bit of noice I was grabbing onto my partners arm. I was feeling really hot but was too scared to take the covers off. It’s just so strange because I had only taken 2 tablets yesterday and this is the affect it’s having on me already! What’s it gonna be like at the end of 6 weeks! Did you have anything like that?
Posted Thu 11 Oct 2018 22.11 by Holly1
Has psoriasis since 2001
Hi Scottish girl sorry I never replied iv not logged on in while....how are you getting on? Can say I have hallucinations that sounds a bit scared hope they have now stopped for you!
Posted Thu 11 Oct 2018 22.13 by Holly1
Has psoriasis since 2001
Hi everyone hope you are all doing well! I’m still on ciclosporin but it now seems to have stopped working 😔 so dissapointed I have an appointment in two weeks so will see what they say, did anyone have this? If so what did they do? Also for those that ciclosporine didn’t work for them what was the next treatment you tried? Just want to look up my options before my next appointment thanks
Posted Thu 1 Nov 2018 23.15 by Tom92104
Good to read all of your experiences of ciclosporine. I used for a year, from July 2017 to July 2018 and within weeks my skin was clear and stayed clear! It was literally life changing!
However, as soon as I came off it my psoriasis started to return!
Now it's worse than ever, all over my face, arms, legs etc. I'm starting a biological drug next week called Stelara. I'll let you guys know how I get on!
Posted Mon 12 Nov 2018 22.52 by Megan1998
Hello, so I've been taking Ciclosporin for 2 weeks now and my skin is almost clear which is amazing but I've had terrible side effects I get a headache everyday I constantly feel sick and have the worst pains in my tummy and I've started getting the tingling in my fingers. Anyone else been this bad??
Posted Tue 13 Nov 2018 07.58 by Heidiloobylou75
Yes it’s known side effects. As soon as I’d stopped, I’d get a flare up in other places I never had before!! Originally, I went to dermatologist from my GP as the treatments gp gave didn’t work, at that time I only had on elbows and knees but always so angry red. Then I was given Ciclosporin, the MTX , so wish never started it. Guess maybe my conupance for vanity. But now as it’s spread and now I’more anxious and embarrassed, I’m trying UV theprapy the narrowband one which Is very low risk of risk cancer. Hoping starts to work ....I go 3 times a week.
Posted Fri 14 Dec 2018 14.25 by angrycloud
Hi - I am new to the site - but not new to psoriasis - had it since my teens and am now in my 40s. 4 weeks ago I started ciclosporin and have had similar experiences to some of you - mainly the sensitivity to hot water. The redness has gone down but my plaques are yet to show signs of improvement, which is a drag as the doc suggested an improvement would be seen in a week.
I have a question around exposure to sunlight whilst on the medication, living in the north east of England in winter where sun can be in short supply, do I have to put sun block on for a short 20 minute walk on a sunny day in the middle of winter? My doctor wasn't really specific - just after your thoughts. Thanks.
Posted Fri 28 Dec 2018 15.55 by Ryreww
Hi there,
I’m new to this group and been on ciclosporin for roughly a month and a half. Seems to be working so far and all your comments have been very supportive and comforting.
I have one question though - would the ramifications be severe if I was to have an all day alcohol binge as a one off tomorrow? Or would it be adviseable to stop taking it as of tonight?
Posted Sun 30 Dec 2018 08.55 by Heidiloobylou75
@andy lee
What is it? Since stopped cyclo, as my previous message says I had UV light. After 3 weeks they said no change, and was stopped as not working. I go back dermatologist 29/1/19 so see what else I can have. Since been on meds, I’ve had breakouts. Back legs, calves,bottom. Horrendous and knocked my self esteem. 😩 dunno what else there is......
Posted Mon 31 Dec 2018 15.37 by pdr321
A long sufferer of plaque psoriasis who found an effective treatment after 27 years (blueberries). I have now been clear more than 5 years.
Hi Heidiloobylou75,
There is `this:
https://www.psoriasis-association.org.uk/forums/topic.aspx?ID=1314
...a long forum but read the first post.
Good luck,
Phil
Posted Sun 8 Mar 2020 13.40 by JH2020 (edited Sun 8 Mar 2020 16.58 by JH2020)
I’m 32 years old I have had Psoriasis for around 5 months now. It started as Guttate Psoriasis around my elbows then spread across my arms legs back and stomach. I tried various steroid creams and emollients but nothing worked it just got worse. I recently had a skin biopsy done to get a full diagnosis as there was a thought that it may be something else called Lichen Planus. Any how the diagnosis I got was indeed psoriasis but now the rash is so bad large parts of my body are red raw (around 80%) and very scaly. I can also see new parts appearing on my neck and face. As the condition is so bad my dermatologist said I have erythodermic psoriasis which can be fatal. So she swiftly put me on Capimune (ciclosporin) 6x 50mg capsule per day. Which i started yesterday.
So far no changes (good or bad) but I will keep you posted. Keen to hear if anyone else has experience similar to me and if ciclosporine helped?
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Posted Sun 8 Mar 2020 14.09 by DodgeWC51
Hello. First answer, yes can be fatal, and that's a wake up call I know. Most Important, can be controlled! I've had it about 5 years now. Cyclosporin does work. I was on it for about 18 months. There is no quick answer it will take a good 3 months before you see improvment, but bear with it.
I won't soft soap you, it's going to be a long frustrating process. You will have read all the Patients Notes. That's enough to scare anyone, but bear in mind it is written for lawyers, so if it moves they included it. Practaically, I had a tingiling taste in my mouth and fingers. Annoying but not painful. There are a number of treatments, everyone of us is diffrent. I'm now on Adulimumab, AKA Humira, which is injected, I had Psorasis all my life so though getting Erythroderma was a shock, it probably wasn't as much as it was to you.
Be prepared that it may take a while before you find a treatment that works, and the hassle of regular weekly blood tests . Drink plenty the stuff does dry you out, you may also find you feel cold all the time, the skin regulates temprature, when it don't work properly you notice. Don't panic of the dreaded V word at the moment either. Just wash hands, If anyone has a obvious cold or flu, keep a disatnce, your immune system will be suppresed , it's how Cyclosporin works, but as yours is over active anyway why worry? Where I work I and another guy who has immune problems are the only two not panicing. :-) Get as much correct information as you can, you might feel lousy, but at least you know why, and you know it works. The stuff is a wonder drug, originally developed in the early '70's it was the drug that made transplant surgery possible. So you know that you being given a proven treatment that is well understood. Be prepared the condition never goes away so it will need controlling for the rest of your life, but it won't stop you doing anything you turn your mind to. When the need to bitch comes upon you, and it will, everyone here knows how it feels, and we listen.
Posted Sun 8 Mar 2020 17.01 by JH2020 (edited Sun 8 Mar 2020 17.41 by JH2020)
Thank you DodgeWC51
It really is a shock to go from 0-100 but keen to try anything that will help. Even in the few months I’ve suffered my quality of life has gone truly downhill. I am sorry to anyone who has suffered this disease for such a long time I hope we can help heal each other with good stories.
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Posted Sun 8 Mar 2020 18.31 by DodgeWC51
The downhill is tempoary, though there are few bumps along the way. My Mother had Psorassis , so I've always known what it was, and back then there was really no treatment, so we have it lucky. Yes, I know about people looking reluctant about sitting in a chair after you, or needing to have a vacum cleanear behind you. But it isn't you, most people once you have explained understand , the rest Sod 'Em, you can't cure ignorance. The best answer to Psorasis is don't worry about it, and I know that is easy to say, but true, stress dosen't help at all. Don't go into a coccon, Once the Cyclosporin takes effect you won't belive how much improvment there is. It can get to you, ask your Dermitologist about patient groups or your GP. and of course there is here. You sound like you fit the group that would qualify for Biologicals, ie injections of MonoClonal Antobodies such as Humira. Once the intial burst is setteled and your on stuff like that 100% clearance is possible. Talk to your Dermatologist and keep thinking forward. Lecture over. so Noli Iligitimi Carborundum!
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Posted Sun 8 Mar 2020 22.08 by DanielC
Had psoriasis since I was 17, now 50+
Hi
I can't emphasise enough about making sure that you're being looked after by a good & responsive dermatology unit.
Effective treatment & care should then follow 👍
From what you've said & from my experience, cyclosporin is probably one of the fastest working & most effective medicines for severe psoriasis. But as previous contributors have said, everyone is different and it might not work first time.
Fingers crossed it works for you 🤞😁
1
Posted Mon 9 Mar 2020 10.20 by Bethkin
Ciclosporin did me wonders!! I have PPP psoriasis and when it’s bad I can’t walk as it’s all over my feet and my hands get mega sore. A week after starting ciclosporin it started clearing up!! It was like magic!
However now I’m having to come off it! I have been on it for 2+ years and my kidneys are not liking it...
They said there going to send me to biologicals because nothing else is working? and Because I’m at child baring age (I’m only 27) there limited to what they can use!
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Posted Mon 9 Mar 2020 20.54 by DodgeWC51
Bloody brilliant Stuff! None of the side effects of Cyclosporinand has got me 99.9% clear.
Delivered to the door. Once a fortnight injection, which takes a couple of minutes, no pain. You may find when you first start the loading dose you get an od dtaste in your mouth about twenty minutes afterwards, suck a perpermint it goes away. It can be hassle if you want to travel abroad with it, as it comes in a pretty impressive injector. A hell of a lot more convient the Cyclosporin. I take the injector out of the fridge about an hour before I use it, just to let it warm a bit, less sting when injecting,
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