Hi All,
I have been suffering with severe scalp P which has also gone to my forehead, nose, belly button and nails (nails keep lifting and eventually falling off) for about 5 years now. Ihave tried every type of topical treatment going with no help at all.
my doctor has just advised that my only option left to try is to take either ciclosporin or methorexate.
I am so confused which one I should try. I've been told I can only take ciclosporin for up to a year and methotrexate is long term. There is also a chance that the p has gone to my joints too (waiting for a referral to see)
Does anyone have any advice? I am 31 and at my wits end with it all. I've read that at lot of people as soon as they stop ciclosporin their p comes back very quickly and with a vengeance.
what side effect/results have people experienced?
Any advice to help me make my decision?
Thanks
Posted Fri 15 Feb 2019 11.58 by Salty Backpack
I had complete clearance with Methotrexate but had to come off after a year due to red blood cell count...no side affects at all.
Have you looked into your diet/life style before having these?
Posted Fri 15 Feb 2019 12.01 by Nik2019
yes, tried everything nothing seems to work. was advised caffeine could be an issue so completely cut it out 2 years ago with no effect along with various other things.
when you stopped methotrexate did your p come back?
yep, it started to come back before they took me off it.
i only asked about lifestyle etc because since October i cut out all red meat, sweets, crisps (anything nice) which left me with veg, fruit, fish & Chicken....my skin cleared over 3 months.
im left with minimal P :)
Hi Nik2019
I started methotrexate 4 weeks ago. I have P, also been diagnosed with psoriatic arthritis. Some of the joints on my fingers were swollen and very tender also my ankle but not so bad. , GP sent me to a rheumatologist Who suggested methotrexate, she only gave me 4 weeks, Iv had no side-effects and the pain and swelling i would say is massive improvement, I will have to see what she says on my follow up,
All the best
Posted Sat 16 Feb 2019 06.47 by anupam
My father aged 73,a diabetic patient,is on cyclosporine for the last 4 months(100mg*twice daily),which cleared his pustular psoriasis..He is suffering from this disease for the last 14 years and was on methotrexate on and off.But now methotreaxate is not working.I am eager to know.
,considering the age of my father,can cyclosporine be discontinued now or the dose be reduced.
Thanx
Anupam
Ciclosporin is the DEVIL! Dont take it.i was on it for 6 months then had to come off.It worked like magic cleared my psorasis up great.But was told i wasnt allowed to stay on.when it came out of my system.Get ready for the worse flair ever made my psorasis worse than it was before and in new places 😞.might not happen to everyone but just thought i would share the experience just incase anyone was thinking about taking it.
I will be 70 this year and have been on Cyclosporin for just over a year.
It cleared my psoriasis within weeks.
I was started on a high dose but now take 100mg per day.
My consultant tells me some of her patients have been on a low dose for years and it keeps it under control.
I have to have kidney function tests every 6 weeks plus regular blood pressure tests.
When I tried to lower the dose to 50mgs per day the rashes came back.
Posted Sat 2 Mar 2019 22.07 by Nik2019
Hi,
So I have just started ciclosporin (day 2) and seem to get a hot throat a short while after taking the medication. Has anyone else experienced anything like this?
Posted Sun 3 Mar 2019 19.33 by Laurie
Im on day 5 with ciclosporin and my p is spreading all up my arms I now have little spots too!! When I apply it my skin gets so hot and makes me itch....
So I wouldn't recommend it, stopped applying it tonight and going to call doctors this week.
Posted Sun 3 Mar 2019 21.10 by MabelD2019 Recently been diagnosed with psoriasis and it's spread everywhere
I just saw a private doctor and was prescribed ciclosporin, but only discovered when I got home from the pharmacy that the capsules are gelatin cases and I'm vegetarian.
I haven't taken these tablets and am going to call the private doctor tomorrow. Aside from being down by £120 odd, I'm now worried after reading this thread that it's not a good medication to take, as it will all come back once you stop. I was diagnosed recently and it's spread now everywhere apart from my scalp, so far and fingers crossed (hence private doctor).
Has anyone had success with methotrexate? Is that a capsule medicine? Was there a major flare up when this was stopped?
Advice please, as am worried. Thanks
You have to try it.If it does not help you can stop taking it.
Like you I was apprehensive about taking it but it has changed my life.
My symptoms were so bad I was not able to sleep for more than two hours in any day,and I only got that amount because I was truly exhausted.
As I said in my earlier post I am on 100 msg per day..
You may be lucky like me..I know I may have to stop taking it sometime in the future,but I am so grateful that I have my life back.
I think you should remember we are all individual,it may turn out to be the best decision you have ever made.
I know it was the best decision I could have made.
If you do go for it,please let us know how you get on.
Posted Sat 9 Mar 2019 03.12 by anupam
Dear Sir(Mr Charmarr),As you are almost my fathers age,If I can ask you one question,do you experience any weakness , daytime sleepiness or severe exhausition after a small walk after taking cyclosporine all these months.My father is on cyclosporine 150mg(daily) for the last 3 months for his pustular psoriasis.Before that he was on methotrexate on and off for the last 7/8 years.Stay fit stay healthy.Regards.
Hi anupam.The only problem I have found is a bit of weight gain which of course could have nothing to do with Cyclosporin
I do not experience the symptoms your father is having but would say stick with it.
It has given me my life back.I hope he can get the same benefits that I am getting.
Best Wishes.
Posted Sat 9 Mar 2019 15.05 by MabelD2019 Recently been diagnosed with psoriasis and it's spread everywhere
Hi Charmarr and Eve,
I haven't started taking the medication yet, as have been given a liquid form of cyclosporin. Just waiting to collect from pharmacy on Monday. My P has now spread to my scalp, so that is now every inch of my body literally head to toe, including my face. To say I'm depressed is an understatement. I read on another post on this forum that eating blueberries everyday, with no prescribed medication has helped clear people's P completely. People who have been suffering for over 50 years and no totally symptom free. However, there are others who tried It and it didn't work for them. I'm so confused as to what I should do, blueberries or cyclosporin? Any advice, anyone? Would really appreciate it.
Posted Sat 9 Mar 2019 17.08 by charmarr
Hi Mabel.You have to try the Cyclosporin.If it does not work you just stop taking it.
As I said in an earlier post it was a life changer for me.
Good luck.
Posted Sat 9 Mar 2019 18.20 by anupam
Thank you Sir(Mr Charmarr) for your kind advice and guidance.Unnecessarily I was blaming cyclosporine for my father s other complications,today found that is due to some cardio issue.My fathers P is almost 80% cleared and I guess for some people it is like a long term therapy in low doses....Lets see how my father fairs.Thanx & Regards
Posted Sat 9 Mar 2019 20.21 by charmarr
That is great news anupam.Make sure your father has regular blood tests to check his kidney function.
Best Wishes.
Posted Sat 9 Mar 2019 20.41 by Eve29
Hi Mabel,it must be a proper shock to you to just get covered in psoriasis just like that..how old are you?I was diagnosed when i was 17 and 29 now.ive tried most things and getting worse with age,spread to hands and feet.As ive said i took myself of tablets (mxt) cause my white blood cell was low,and kinda thought what am i doing on this tablet at my age,what damage is it doing to my insides.so bought a sunbed uvb and taking tumeric tablets now working well for me(even tho theres a risk of skin cancer).its a bit like you carnt win with this skin condition lol.If its really getting you down just go for cyclosporine.it is a really good drug and clears well...just look after your health while your on 😊.I dont know why but my dermatologist said i was only allowed on it for 6 months,But read on here people have been on it for years.And to be honest i would have still been on it,if she didnt take me off cause it worked that well 👍🏼.I didnt have any bad side affects while taking it too.Its only when i was took off it came bk worse..x
Posted Sat 9 Mar 2019 21.45 by Bethanylouise0x
Hi,
I am new to the forums but have just started ciclisporin so thought I’d give you my account of taking it.
I started the medication almost two weeks ago, first few days I was fine, by day 4 the side effects had crept in. I’m suffering really bad with stomach pain, neausea, back pain, head aches, numb/hot and cold feet and hands as well as tingling in my lips and headaches. Everything I can deal with but I am really struggling with the stomach pain, it’s awful - that bad that I haven’t been to work for the last two weeks that I have been on it. My psoriasis is getting better though for the first time in 6 or so years... I am only 24. I have severe psoriasis on my hands and feet including nails, as well as my whole body including my scalp, but my hands and feet effect me the most. My hands are no longer filled with scales but are just red now which is better. So the side effects are worth it (I think!?) I don’t know if I can put up with the side effects for 3 months but I’ll see what they say at the hospital Monday when I have my checkup for my blood pressure and bloods. I’m hoping that I can continue taking the meds but take a strong painkiller with it so I can go back to work.. has anybody had anything similar?
I have tried every cream going, as well as PUVA light therapy at Addenbrook but nothing worked, my dermatologist they said she would put me on ciclisporin as methotrexate takes longer to work. Which like I said after 4 days I noticed a difference.
I’d give either a go to see which works, although according to my GP, who also has psoriasis, ciclisporin is a high dose medication and I am the only one under the local practice that is on the medication, he was quite surprised when I told him I was on the medication and that the dermatologist dr hadn’t put me on methotrexate, but I suppose that’s one drs opinion against another.
Good luck either way!
Bethany :)
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