Cyclosporine and methotrexate

Hi Emma, 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

Hi Emma. I've used both Methotrexate and Ciclosporin. Feel free to see my post from earlier today: https://www.psoriasis-association.org.uk/forums/topic.aspx?ID=1388. Feel free to ask any questions.

Hi, all I’m new to this forum but I would like to share my experience with living with psoriasis for most of my life. It started when I was about 17 years old, I’m now 73 and I’ve used just about everything that’s been on the market in that time. When it was at its worst, when I was in my 40’s, my dermatologist put me on a course of PUVA as it was called then, now I think it’s called UVB. I live on the Isle of Wight and the treatment was very new on the island, I think I was one of the first to go onto it. I can’t remember how long it was before I had signs of the treatment working but it did work and I was clear for the first time in about 17 years. As I’ve said above, the treatment was new, not only to me but the staff that were administrating it, after about 3 weeks of being clear my skin dried out, I was dehydrated and very ill. I found out some years later after they had changed to UVB that I should have been told to drink lots of water after each treatment. Since I had the PUVA treatment I have noticed my psoriasis has never got as bad as it did before the treatment. When I was in my mid 60’s I had a flare-up and because of my experience with the PUVA treatment I didn’t want to go onto the UVB treatment so my dermatologist put me onto a course of Cyclosporine, I had a blood test before the treatment started and I had blood tests every 6 weeks thereafter to check that the Cyclosporine was not effecting me in any way. Things were fine for just over a year when a blood test should the Cyclosporine were affecting my liver, it was not serious but I had to come of the tablets. I then started on my current treatment Methrotrexate, this worked fine after about 3 weeks I could see a difference, in another 3 weeks I was clear not one piece of psoriasis anywhere, I felt great, I was having blood tests very 6 weeks and seeing my dermatologist after the test. Then after one blood test my dermatologist was changed and I had to see a locum, he asked how the tablets were going and when I said they were working fine and that I was clear of my psoriasis he said that’s good I’ll take you off of the them. When I protested, he said that Methrotrexate was not meant to be taken indefinitely, within 4 weeks my psoriasis was back and I had to go back through my GP to get an appointment back at the hospital. The next time I saw my original dermatologist some 8 months later and told him what had happened he couldn’t believe it and put me straight back on the Methrotrexate but they are not working as good this time around, I was started on 10mg and now I’m up to 12.5mg but it’s not working. I have another appointment in 2 weeks and I’m going to ask if there is any other treatment I can go onto, I’ll keep you posted! Chris

Thanks everyone. After the UVB treatment it did start to come back but only slightly and it was easily bearable although strong to come back in earnest again now (a year later) so will probably try UVB again and hope it works as well. I've had a good run of being nearly free of it though. Your comments are really helpful though as I may still have to have the tablets at some point if the UVB stops being effective. I didn't have a problem with dehydration but it might affect people differently. Also, they may have changed the dosage since then. I would recommend UVB if you have time, the main problem is that you have to have it 3 times a week for a few months which can be tricky to fit in

Been on cyclo a fair few months, and I’m feeling rough. I’m gonna come off and just put up with the pscoaris Feel it’s ruined my life I’ve lost my mojo, tired and generally cba with anything. I do hw and look after the children/home etc but in myself I’m lost. Rather have the stares from people looking at me than feeling rough. Getting golds, rundown and lathargic feelings a lot. Tiredness, well , that’s pants! Anyone just come off it just like that? MTX was a no go didn’t work at all! Just wanna feel ‘me’ human again! I’m 43 in a 90 year old woman body!! Xx

Tried many different treatments( various topicals) of which ive found Diprosalic ointment and _____ work best hands down but do not completely rid me of it... will get rid of scales and make my skin flat but will not get rid of redness... i was on mtx for years....on and off...due to side affects that i would tire of... always sick it seemed... no energy, nausious for 10 days of the month, hair loss ect... i wanted to look good to feel good but really there was no feeling good while on them.... 3 months to totally clear and within 3to4 weeks it would be back if i stopped.... embarrassing to say but to try to combat that i started to do meth.... the street drug... eventually i stopped the mtx but remained addicted to meth.... i dont know what the 2 share in common and i dont recommend my route at all but for some reason it seems to keeps it in check with just the ointment... when i dont do the meth i flare up right away... im not telling people this as advise with your own struggle but i am serious someone should do some research on what componants in it represses the psoriasis... if you ask me id rather be addicted to meth and have energy to have a life while knowing it helps with the condition n some way rather than feel like death and risk organ failure on metheltrexate...im not saying im right im saying depression got me to that point and even though it maybe illigal and frowned upon (understandably) i will do anything to function normal and have clear skin... anything! Judge away... know you will... i tottally would judge others too.... closet case and ashamed but also dont give a fcuk cause it works! Somehow doubt thus will remain n the board very long but it was nice to finally tell someone... alone on a dark path... wouldnt wish this fcukin shit on anyone

I’m not a judgemental person. So I’ve no comment on that, apart from it’s down to u no one else and sure no one made u. But it’s a hard struggl.e. I’ve just come off the cyclo as not worth the crap ness feeling. I’m hoping hospital will give something else.

I don't judge, we all have to deal with this in our own way, I'm not dealing very well. I'm wary of the cyclo/methotrx route as it's been offered. I am trying the uvb soon. This is all so depressing. I can't work as my hands are so bad, not so much the appearance, which is of course horrible - but I can't do much with them as they are weak with no grip or power to do anything. Scalp is bad too but of course it's not visible. It seems we have to risk our health just to be "normal"

Hey guys! Iv been reading this thread and y’all have really calmed me down that’s for sure lol! I have extreme anxiety especially with taking pills and I’m definitely a hypochondriac when it comes to swallowing medication 😅 i got diagnosed with eczema and psorasis at 16. Never once had any huge flare ups though until about 19 years old. Was told it was an allergic reaction though so I didn’t think twice about it. They gave me a steroid injection at the ER and it disappeared in 2-3 weeks 🤷🏻‍♀️ So after that, I would occasionally get a scale here or there but iv always had it severely on my scalp. UNTIL THIS YEAR OH MY GOD. If I could show y’all pictures on here I would! My dermatologist and doctors are going nuts trying to figure out what’s different or what caused it. There’s many theories. 2 months ago I stayed at an air b&b and I woke up in hives. Thought it was bed bugs but it was spreading everywhere so I went to ER. They told me it was an allergic reaction to something so they gave me doxycycline...my body HATED the doxycycline so I refused to finish it. Well then about a month later I ended up coming in contact with someone who had strep throat and I didn’t know. So I then developed strep 🙃 went back to ER and got prescribed amoxicillin... ended up being severely allergic to it 😩🤦🏻‍♀️ So I had about 2 days left of it and I could NOT take it. Well because I didn’t finish that medication my dermatologist told me that I developed another type of psorasis from the strep which most of us know as Guttate Psorasis. My skin .. when I tell you looked like I rolled in multiple ant hills.. it was BAD. Tried multiple ointments, nothing worked. Home remedies, oatmeal baths, bleach baths, epsom salt baths, anti fungal baths even 🤷🏻‍♀️ my skin wouldn’t budge. (I promise there’s a reason this story is so long lmao) Keep in mind, iv never ever had this bad and long of a flare up. It traveled all the way up from toes to cheeks! So I went to the ER again because I was desperate and my skin was starting to burn actually.. so I convinced the ER doctor 2 weeks ago to give me another steroid shot since it worked so well for me at 19. (I’m 27 now) - DID ABSOLUTELY NOTHING. I marched back up to my dermatologist next morning almost in tears because this was taking over my life! I couldn’t even hide it anymore with clothing at work. SO she prescribed me triamcinolone acetonide cream 0.1% and OH MY GOD this is by far a miracle ointment! It’s been 4 days and my back which was COVERED is now pretty much cleared. My legs are taking a bit longer but it’s definitely working. I was supposed to only use this ointment to hold me over until my lab results came back to get approved for Cyclosporine. Well I’m supposed to start it tomorrow (6 pills in the morning and 6 pills at night 300mg for 3 months) and now I’m sort of wondering if I should wait a little longer to see if this ointment clears me first? Cyclosporine scares me. The side effects are really extreme and me being nervous just taking an Advil.. would prefer to not be on cyclosporine if possible.. however I’m afraid that if I don’t take the cyclosporine then this will come back in full force. I was warned by my pharmacy, doctors and dermatologist that this medication can lead to death if not monitored religiously. Which honestly makes me feel like it’s not worth it. I just recently lost 140 pounds so weight gain side effect scares me. I worked really hard to lose this weight. And hair loss on head and growth everywhere else?! Heck no!! The swallowing I’m reading that some of y’all are having trouble with and sore throat ?.. actually terrifying let’s be real for a second. Who has taken a dosage as high as I was prescribed of cyclosporine who also has extreme anxiety like me? I need YALL to tell me what’s really going on 😂 the reviews are great here but the reviews iv read elsewhere are terrifying 😩 halp!

I don't have extreme anxiety, but towards the end of 2017 I was put straight on 300mg Ciclosporin, after UVB phototherapy failed. I'm 65kg, if body mass is relevant in terms of dosage. At the time, around 70% of my skin was covered in very itchy, very sore plaque psoriasis. I started to see/feel improvements after the first month. I stuck with it for around 4 months and it worked a treat! I was lucky to not have any noticeable side effects. I hope it works for you.

Cyclo has been an absolute miracle for me. For the first six days I had sweats, fever, the works. Then within about 24hr my symptoms vanished... as did my psoriasis. To think something that has plagued me for over a decade just vanished so quickly - it’s crazy. I notice I have to shave my legs slightly more often, but having been unable to do this properly for a decade because of psoriasis, I’m fine with that!

Hi everyone, I have recently been diagnosed with erythrodermic psoriasis. I first have symptoms at the end of July this year 2020. The symptoms started with scaly red spots on the back of my neck and scalp. Over the space of four to six weeks my whole body from head to toe was covered in extremely dry scaly peeling red skin. I was referred to a dermatologist who as soon as seeing me admitted me into hospital. I stayed for three nights while they did various tests including a biopsy. The conclusion after all the tests where I have erythrodermic psoriasis and Psoriatic arthritis. I have weekly visits with a dermatologist in hospital. I have now been put on methotrexate for the following six weeks as the topical creams will not help as I have been told by the dermatologist. I have never had skin conditions before and this sudden flare up has hit me as a major surprise and shock. Has anyone had psoriasis so severe whereby more than 90 per cent of the body was covered and does methotrexate work and if so how long have they been on methotrexate. Regards AJ