Posted Sat 23 Nov 2013 11.38 by Molly Have had psoriasis since the age of 2 (now 46). have tried everything with the usual mixed results. Recent UVB didnt work - doctor now re
Hi - I've had psoriasis since infancy (40+ years) and have had all the usual topicals plus UVB. Dermatologist now wants me to try cyclosporin or methotrexate. I am unsure as even though the ps is awful the side effects of these drugs seem as bad in a way. Plsu I dont like the idea of never having a drink again!
Can anybody give me any advice.
Posted Mon 7 Jul 2014 18.59 by bev61 First got plantar psoriasis in 2009. I have been in remission until April 2014, but it has now returned with a vengeance.
Just saw this post, so my reply may be irrelevant, but a consultant put me on methotrexate when I developed psoriasis on my hands & feet. I took it for 2 months & the condition completely cleared up. I was in remission for 5 years after that. Obviously there are no guarantees! My psoriasis has returned but I can no longer take methotrexate - I am taking medication for an unrelated condition which is not compatible. My consultant has put me on Neotigason. No idea if it will work but will try it. As for alcohol - normally you may be on methotrexate for a defined amount of time & it won't stop you having the occasional drink. You certainly won't have to go tee total forever!
1Posted Mon 7 Dec 2015 20.43 by Morvy I've had psoriasis for over 7 years and not yet found a way to manage it
Sorry just tagging on this post. I've also been asked to go on either of these, is there anyone else with experience of either of these medications? I'm really unsure due to side effects on both!!
Posted Tue 8 Dec 2015 09.13 by Suzie I have suffered for around 7 years and have it covering my back and front.
Hi, I'v been on both cyclosporin and methotrexate. i started on cyclosporin as its just a short term medication to get my P under control so i was on it for about 6 months, it gave me tingling hands and feet whenever i had a hot shower and i also got miagraines but other than this it was fine. I was then put on Methotrexate 2 years ago and I'm still on it now. I get on ok with it with no side affects and i have blood tests every 2 months. Hope this helps :)
Posted Tue 5 Sep 2017 10.50 by Lotte
Hi
I reached the final straw with my severe scalp psoriasis about 3 months ago when the itching became unbearable, the soreness painful and the flakes embarrassing. Most nights I went to bed depressed or worse sobbing myself to sleep. I gave up with my GP(s) as essentially they are not skin specialists, don't fully understand, let alone sympathise, with sufferers and certainly don't know about or have access to some of the medication available. I paid £300 to see a private consultant dermatologist who I felt was the first and only doctor to fully appreciate the misery this condition was causing me. After a comprehensive consultation he advised me I could take Cyclosporine to ease the condition subject to various initial tests and ongoing reviews. I am fully aware of the side effects this drug can have, not to mention the fact that it probably won't cure me. I'm aware of the numerous critics including the less than sympathetic people who say to me "it's a hammer to crack a nut!" But let me tell you that this "nut" was blighting my life and within weeks of being put onto cyclosporine my itching has almost completely faded, the flakes almost completely gone, my confidence and self esteem has improved and for once in my life I don't feel as though every second of my waking hour is consumed by the thought of my condition and being compelled to scratch my head!
Ultimately it has given me huge relief and even if this will not last forever I am prepared to take the risks associated with it for this period of let up and to perhaps buy me some time to research, understand and come to terms with having to potentially overhaul my whole lifestyle to achieve a more long term and less risky solution to my condition.
In short, despite costing me a lot of money to get to this point (the medication costs £163 per month itself let alone the cost of my reviews!) it has for now changed my life!
There are of course serious side effects, and like me you should fully research and understand them before embarking on this pathway!
Let me know if you have any other questions!
Charlotte
Ps. I'm a reasonably healthy 30 year old who rarely gets ill and my blood tests showed "perfect" results as quoted by my doctor regarding my kidney function and blood pressure. I have regular reviews to keep an eye on this and the only side effects I have experienced so far are burning sensations in the hands and sometimes feet, a couple of hours after taking my tablet. It's sometimes weird and a bit annoying but it usually passes within an hour and is a small price to pay for the relief I have got! You probably shouldn't drink excessively on this drug but I'm not going to lie, I'm partial to a binge despite my best intentions (I'm that generation unfortunately!) I'll try to cut down but ultimately cyclosporine metabolises through your kidneys whereas alcohol metabolises through your liver. So although a binge will no doubt probably reduce the effectiveness of the drug, it probably won't kill me. Nonetheless I don't really want to pay hundreds of pounds for a drug then make it not work! I suspect and believe however that methotrexate metabolises through your liver though and in which case it is probably not safe to drink on it! It also sounds like a much stronger drug which takes years to leave your system and is linked to birth defects! Cyclosporine usually leaves your system in 2-3 months!
FYI - I am by no means a doctor / specialist but have done a lot of reading on the subject! Alcohol is the devil generally anyway though and bad for your body all round so I'll do my best to give up the heavy nights out!
1Posted Tue 5 Sep 2017 14.51 by ClearskinPls Since 2001, tried uvb and creams
I have had great results with ciclosporin. On it for 6 weeks so far and Psoriasis has more or less gone. I recommend it. No itching no flakes. If you doc can give it to you ...try it. Your bloods will be monitored so if your body does not like it you will come off it
Posted Thu 21 Sep 2017 18.03 by Jidda
I'm about to embark on ciclosporin journey I've always been sceptical of any oral meds but these last few months p has taken over my life I have had to give my job up my social life is non existence and my confidence and self esteem have plummeted even then I told my self to live with it until this last week I have had an even worse flare 80% coverage the pain was unbearable sometimes I'd lay there when the alarm went off preparing myself for the pain I was going to endure just getting out of bed but it was my children that made my decision my eldest son nearly 14 was helping me with everyday tasks my daughter 6 was asking me everyday if I was any better I couldn't even put her hair up without it hurting.. Then my son aged 10 told me he had prayed to God that my p was gone and wished on his birthday cake :( just today had a GP app she wanted to admit me but there was no beds so went to an emergency dermatologist and the plan is ciclosporin and daily hospital treatment I'm really hoping this works for me even to bring it under control I want my life back I wish everyone all the best on there journey
Posted Fri 22 Sep 2017 07.26 by Lotte
It will work as long as you're fit and healthy enough to take it. I hope you sort it. Sorry to hear how painful and stressful it is for you.
Posted Sat 23 Sep 2017 23.06 by Peterb (edited Sun 24 Sep 2017 06.41 by Peterb)
I have had psoriasis for over 45 years and have had many alternative treatments over the years. In the early years In was covered from head to toe, been in hospital for a couple of weeks to try different treatments to reduce the problem with no joy. Went on to Methatrexate for a period of 15 years and it completely disappeared. The problem was it could seriously damage the liver and that was where the problem started. Around every 5 years I had to have a liver biopsy and that caused me great problems as they didn't hit the spot sometimes even after 2 or 3 attempts and it caused me great pain, went into shock and was the worst experience ever. After around 15 years and having had liver biopsies for the third time I could take no more.
I went back on creams again which wasn't that good as they can be so messy. The best cream for me was a mixture of 5% coal tar, 5% salitic acid in emulsifying cream which I have been using now for many years. At night I treat my head with this cream massaging it into the scalp, wrapping my head up with cling film and in the morning, using a head scrub, wash it off with Exorex shampo. I do this once a week and although it's not a cure it keeps the crusts away and at least makes me feel a lot better. I get mine in 2 x 500 gram tubs which my doctor supplies but it is very exspensive as it's made up in newcastle and with special delivery costs around £800 a time. It lasts me 10 to 12 months though but it's brilliant for me. I also treat my body with the same cream although of late I have been prescribed Enstilar for my body which is fantastic and really do work. Someone said use it on your head but not a good idea as you just can't get it out.
Peter Bullard
Posted Sat 23 Sep 2017 23.27 by Jidda
Hi Peter I can't imagine how hard it was and still is for you to suffer for that long... I have read great reviews on enstilar foam unfortunately I wasn't aloud it in my town my GP is not aloud to prescribe, money I expect, so ciclosporin and daily hospital for me.. I've only had p for 6 years but this. Time is the absolute worse with it being 90% coverage now so I'm hoping it helps to get it under control.. All the best on your continuing journey.
Posted Sun 24 Sep 2017 08.44 by Peterb
Hi Jidda.
I have read other people's posts and they say that their . Doctor won't supply Enstilar Foam and others have said their doctor advised it was not available on prescription but I had to go back to see my hospital skin specialist and he prescribed it for me and my Doctor has prescribed it ever since. You can only use it for a month on and a month off but it really works and although there is still a redness it's been brilliant.
Peter
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