Cyclosplorin Thoughts ?

Posted Wed 31 Jan 2018 02.24 by keef

My Dermatoligist has offered me Cyclo, I dont fancy it, Having read the side effects , I have already tried Methotrexate, Didnt work too toxic . Acitretin worked great with U.V.B but not on its own, and Fumaderm which was very nearly brilliant but only at high doses so I had no immune system . So I would like to know people's experience of Cyclo . and what newer Biogic's are available for me to suggest and their life / skin / immune system balance

Posted Sun 11 Feb 2018 08.53 by Idy
Phototherapy, methotrexate, ciclosporin and stelara afficionado

Back in September, I was covered in psoriasis from my neck to my ankles. After around 6 weeks of taking the maximum dose of Ciclosporin, I was almost clear of it. In the first few days I had some mild side effects, like headache and nausea, and in the long term it raised my cholesterol, but apart from that it's been fine.

Posted Mon 12 Feb 2018 22.49 by joey
single mum with two boys, cleaner and home schooler! completely crazy as you would imagine!!

I had this but quite early on my blood pressure went through the roof and i collapsed, defo not worth it for me......or any drug. This happened 10 years ago and I have not been to the doctor about my skin since. I am nigh on bodily covered but no drug side effect is worth clear skin. I have to be well to work for my boys.

Posted Tue 13 Feb 2018 18.47 by ClearskinPls
Since 2001, tried uvb and creams

There can be side affects...research into It; but it does work ,its good its working fir you. ,monitor any side affects and discuss with the dermatologist

Posted Wed 14 Feb 2018 23.44 by joey
single mum with two boys, cleaner and home schooler! completely crazy as you would imagine!!

I don't think i put my reply right, ciclosporin DID NOT work for me, i had kidney failure. I had PUVA light therapy and after two weeks of it finishing it came back with a vengeance ....and i now have damaged eyes from the uv pterigiums i have now....so i HAVE NOT been to the doctor for any treatment as I don't believe the side affects are worth it. This is incurable ,hideous even and lonely but livable. These things that say will help actually make life WORSE.! I hope this clarifies.

Posted Thu 15 Feb 2018 02.24 by ClearskinPls
Since 2001, tried uvb and creams

I know how it feels....ciclosporin is only a respite for this terrible condition and it will eventually affect organs. Its a shame Hang on in there and just constantly see your dermatologist Best of luck

Posted Wed 21 Mar 2018 14.25 by mungflesh

I was on cyclosporin for about 2 years and managed a fairly low dose, It worked very well in getting rid of the psoriasis but I knew it was a short term thing. In the last 6 months I definitely noticed some unpleasant side effects, the main one being needing to urinate more frequently, mainly at night - about 3 times. I am on methotrexate now, a fairly low dose again. It's not 100% controlling the psoriasis but I can live with it so prefer not to raise it. I do a LOT of intense exercise which just generally makes me feel better - mentally and physically.

Posted Wed 21 Mar 2018 15.08 by Gemma

My Dr recommended Aveeno cream for my itchy flaky skin, its very good, I've used it long time relieves soreness, it most supermarkets if you not tried , well worth a try.

Posted Wed 21 Mar 2018 23.24 by Statto

I have been on cyclosporin for just over a year now @ 300mg a day after being on methotrexate for around two years. The benefits for myself far out way the side effects of headaches at the beginning and mouth ulcers. It has not completely gone, but is so much more manageable now. As others have mentioned it’s not a perminent fix as you can only be on the drug for 24 months maximum, with regular blood tests and blood pressure monitoring. I was very cautious at trying any of this type of medicine, but creams and lotions did nothing for me.

Posted Fri 6 Apr 2018 20.23 by Roland

I have been on Ciclosporin for about a year and for the first time in forty years I am free of psoriasis, it is fantastic! Bad news is I have just been taken off it as you can only stay on it for a year and already after about ten days small patches are reappearing and I am starting to itch!

Posted Fri 6 Apr 2018 20.41 by ClearskinPls
Since 2001, tried uvb and creams

A year is the max for ciclosporin. As it can affect kidney stuff. Me too cleared it up so quickly too! Alas muscle side affects made me come off it and psoriasis soon crept back. Ciclosporin is a heavy medication. I went private and got a top steroid cream which is helping Unfortunately there are always side affects. Maybe look at biological treatment?

Posted Sat 24 Nov 2018 11.53 by Anna1

Hi, Ive been on ciclosporin for a couple of months not and for the first time in 22years I'm almost clear. My psoriasis only flare's up with stress and anxiety. I am also now on sertraline and with this my psoriasis is clearing up double fast. Just out of curiosity! Has anyone ever come off of ciclosporin and Never had a bad relapse after???

Posted Sun 25 Nov 2018 00.10 by Caroline

I have been on methotrexate for over 20 years with no side effects and close to 100% clear skin. Though liver test were good, Doctor decided it was time to put me onto a newer treatment. I was given a 3 month trial on cyclosporin and lasted 6 weeks. During that time, I experienced leg cramps, continuous heartburn, lost 15 pounds and felt like I was going to vomit a number of times. I was also very lethargic and just felt like crap. Doctor pulled me off when my kidney function dropped dangerously low. As I was clear when I started I didn't notice any change. It took 6 weeks for me to go through all of the tests for biologicals and during that time had one of my worst breakouts. Within 4 weeks of starting Taltz I was 80% clear and am now totally clear. I live in Canada and between Government and private coverage I do not have any costs though I know it is very expensive.

Posted Tue 27 Oct 2020 09.57 by Breannacourtneyy

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!

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