Ciclosporin or Methotrexate - Advice help!

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Posted Sun 10 Mar 2019 10.13 by MabelD2019
Recently been diagnosed with psoriasis and it's spread everywhere

Hi Eve and Bethany, thanks for your replies. I'm 46 and was formally diagnosed about a month ago but the P started two years ago. The P has spread everywhere including my face. I'm really nervous about starting this cyclosporin medicine. I've now been prescribed the liquid version, which I can collect tomorrow, I'm just not sure if I want to start it. I am even more worried now I hear how you're suffering with the side effects Bethany. I guess I have a lot to think about and just make a decision. Thank you all so much for your comments and advice. Mx

Posted Sun 10 Mar 2019 12.22 by Bethanylouise0x

Sorry if i scared you with my side effects, didn’t mean to do that, just wanted to be honest. Also I have read quite a few forums about Ciclosporin and it’s side effects and the majority of people seem to have tingling in lips, and numbing/warm/cold sensation in feet and hands. I think my pain in my belly is worse possibly because I have ibs too, but I’m not too sure. I’d give it a go either way, because once you see the positive results of the psoriasis getting better it gives you a boost. If you do get side effects and they are bad then you can make a choice whether to carry on or stop. Good luck though Mabel! Bethany

Posted Sun 10 Mar 2019 21.47 by Stan

Hi Nik, I tried both treatments one after the other years ago for guttate, including scalp and they caused me issues which were detected with the accompanying blood tests. One caused me problems with Liver function tests the other Kidney, I think it was methotrexate with the kidneys and cyclosprin with the liver, but it was a long time ago and there is a small chance it may have been the other way around? Either way keep an eye on your blood test results, question the Dr as they are very important. Personally I don't like the chemo drugs, taking down your entire immune system seems overkill, I'll never go down this route again. I have had good results with Remicade (Infliximab) biologics that only targe specific T cells.

Posted Mon 11 Mar 2019 00.45 by MabelD2019
Recently been diagnosed with psoriasis and it's spread everywhere

Hi Bethany, Please don't worry, I'm thankful you were brave enough to share your experiences and I really appreciate that. I know with lots of things these days comes with warnings of side effects and issues, and I understand that everyone is different and people experience different things. In saying all of this, I tend to be that small percentage of people that tend to experience the bad stuff! That said, I'm not going to start the cyclosporin just yet. I'm sticking with the blueberries, as after just one week I've already noticed a change in my P for the better. I hope your stomach pain and other side effect problems ease off very soon. Take care, Mx

Posted Mon 11 Mar 2019 10.37 by Max

I have had psoriasis for nealry two years now, I was on cyclosporin for months and then when taken off it flared right back. I am on it again but if it doesn't hold I think a life style change is the way to go!!

Posted Mon 8 Apr 2019 22.46 by jk76

I was given ciclospurin. Done nothing for me apart from give me low mood. They were going to try me on methotrexate but that can cause low mood too so now I don’t take any prescribed tablets. You just have to try. What might suit one won’t suit the other. Trial and error

Posted Tue 9 Apr 2019 00.21 by MabelD2019
Recently been diagnosed with psoriasis and it's spread everywhere

Thanks for your comments. My Psoriasis exacerbated recently and started getting me even more stressed out and depressed, so I decided I had to try the ciclosporin. The consultant also told me to take a steroid tablet for the first two weeks, as it was so bad. After one week I have finally started to see some good improvements. However, I am starting to get worried that when I do come off it, my psoriasis will flare up. So many people have said this is what happened to them. Is there anyone out there that took ciclosporin and didn't have a massive flare up after they stopped it? I want to remain positive that this treatment will work well for me and it won't flare up once I stop taking it. Thanks, Mx

Posted Tue 9 Apr 2019 10.40 by scc

Hi Mabel, I have been on cyclosporine for the last 14 months and it has worked wonders for me with no side effects apart from high blood pressure (make sure you have your tests done regularly). The relief from the P was amazing and I managed to get my old self back, less anxious and I could relax for the first time in years. Like you I was very resistant to taking the drug but the P was so bad I felt I had to and I am glad I did now, I hope you have positive results too, I am now seriously considering Methotrexate, which I always said I would not do, as being out of pain and not scratching all the time is amazing and I had forgotten what it was like (P since 14, severe P from the age of 17, now 35 years old). I am seeing the Dermatologist tomorrow and I am due to come off the cyclosporine then so I will let you know how the skin reacts as I have heard horrible things about the flare after. As a side note, my Dermatologist for years has told me that it will be Cyclo, Acetretin (did nothing for me apart from lower blood count) and Mxt before the injections. I find it sad that with all the new, targeted drugs (and bio-similars) available that we are made to take the older, broad acting drugs like these which have wider health implications before being given the option of the more modern drugs. I appreciate the newer drugs are expensive but this disease takes so much from us yet sometimes it feels as if it is better to suffer with P than the medications they prescribe to help us! All the best

Posted Tue 9 Apr 2019 13.17 by charmarr

Hi SCC.Why is your consultant taking you off Cyclosporin? I have been taking it for more than a year with the same results you have been getting. I mentioned earlier in this post that my consultant has put me on a low dose to see how I react. The low dose is keeping the P under control.Consultant says low dose on some of her patients has the same results. I can't understand why you are stopping Cyclosporin when you are having such great reaction to it.

Posted Wed 10 Apr 2019 00.39 by MabelD2019
Recently been diagnosed with psoriasis and it's spread everywhere

Hi SCC and Charmarr, Thank you both for your comments. My consultant has put me on a three month course of liquid cyclosporin, with reduced dosage after one month. My main concern is when I'm taken off the cyclosporin that the P will flare up again and with a vengeance (so I hear). I'm pleased to hear your P has much improved since starting the cyclosporin. Like Charmarr, I don't understand why your dermatologist is changing your medication if this is working for you? My P is also starting to improve and it is already having a positive effect on my confidence. I trust both your's and Charmarr's treatments have continued success! Best regards, Mabel

Posted Wed 10 Apr 2019 03.20 by anupam

Dear Mabel.It generally depends on age and other ailments.80% of people with age under 60 and less other ailments face good result with cyclosporine or methotrexate although after tapering down those medicines slowly.Dont worry your doctor will take necessary steps.If you take this disease as other diseases like diabetes,lipids,bp etc you will be more than happy.Giving too much importance to P gives it reason to flare up😀....Be relax and leave the tension on your doctor.Can start homeopathic treatmnt side by side,if your age is within 6o to get more long term relief.I know all this as I know this disease for the last almost 18 years...Thanx...Relax and be happy.

Posted Wed 10 Apr 2019 09.22 by Kay

Hi I dont know if this will help but I've had all kinds of different treatments over the years and the only one that really worked and cleared my psoriasis completely was Adalimumab. It's a pre-filled injection pen that you use every 2 weeks I have been using it for about 5 years hope this helps anyone.

Posted Fri 3 May 2019 16.42 by scc

Hi Charmarr and Mabel, Apologies for my delayed reply. It has been nearly a month since I stopped taking cyclosporine and I am pleased to say that I haven't (yet) experienced the horrible flare that some do when them come off it. I am unsure when other people started experiencing the flare so I don't know if I have avoided it or it is round the corner! I am starting to get mild patches back and I have the odd itchy day but it is nothing like what it was before I went on cyclosporine so at this stage I am pleased with having taken Cyclo and come off it. The Consultant said I have the option of Mext or injections and we will discuss in a couple of weeks when I go back for a post Cyclo review. I was told from the start that cyclosporine is only an option for 1 year due to effect long term usage can have on the kidneys. It's interesting you have been told differently. Has your Dr time limited your usage in any way? As I said I soon developed high blood pressure, have you had this from the Cyclo? I understand that kidney issues can cause high blood pressure so maybe my bodies reaction to the Cyclo (i.e. high blood pressure)prevents longer term use, even if the intention was for one year in the first place. I hope you are both faring well, it would be good to hear about your progress and from anyone else who came of cyclosporine and can share how their P reacted.

Posted Fri 3 May 2019 17.16 by charmarr

Hi scc. Glad you are responding well to coming off Cyclosporin. I saw my consultant last week and she is keeping me on 100mgs a day on Cyclo.She is keeping tabs on my kidney function and blood pressure.She said there will come a time when my body will say ENOUGH Cyclo and that is when she will have to take me off it. I have had to up my blood pressure tablets because it was quite high.The important thing is finding the right balance. I have now been on Cyclo for 1 year and 3 months. Please keep me posted on how you are doing.

Posted Tue 14 May 2019 13.54 by khenry

Hi, I have just been prescribed ciclosporin but am worried about the serious side effects. Did anyone elses consultant talk to them about an increase risk in cancer due to the way the drug suppresses the immune system. Is this a big risk? As i would obviously prefer to live with my P than get cancer due to taking medication.

Posted Tue 14 May 2019 16.31 by charmarr

Hi khenry.Havent seen anyone on this site mention the cancer risk taking Cyclosporin. Because of the suppressed immune system you have to take care if you get an infection. My consultant told me if I get any kind of infection I should get in touch with my GP immediately and get a course of antibiotics.

Posted Thu 30 Jan 2020 14.04 by FlakeyHannah

Hi Guys, Please help! Currently trying to make a decision on the next drug to take. Iv had P since I was 4, and now 34. Have tried all topical, light treatment twice. I came off of Cyclosporin because I got nasty side effects. My aim is to get the biologics but have been told that I have to try Methotrexate first. Is that medical protocol/law ie if I went private would that still be the case? The only other option I have is back to light treatment, but when ever I have stopped that it comes back within weeks.... Im really nervous about taking Methotrexate can anyone give me their experience with it? Side effects etc? I have a toddler who always has some kind of virus or cold....Im always in play areas where live vaccines may have just been given to kids.... The list of 'when to see your GP' is so vague (sore throat/mouth ulcers/nausia) and my GP won't discuss the drug with me because they have no experience with it and do not prescribe it... Can you not take cold and flu tablets? If I was wanting a big night out which would take alcohol units above the guidelines- what would happen? Any thoughts very welcome :) H

Posted Fri 31 Jan 2020 07.05 by Emma

My son is thirteen years old and suffers with chronic psoriasis and has been on both methotrexate and cyclosporin. Neither of the two had a positive affect and left him feeling unwell. He is now taking humira injections and has been since December and after three weeks he is completely psoriasis free and has had no side effects. He has gone from 90 percent coverage to 0. It’s amazing and I now have a happy child after a heartbreaking three years watching him struggling with psoriasis in many ways (bullies). Obviously any medication doesn’t come without risk of side effects so I didn’t take the decision to have him on this medication lightly but it’s been a miracle so far. And he’s very well observed and cared for by his consultant.

Posted Fri 31 Jan 2020 22.34 by scc

Charmarr, i am sorry for not following up on my post in may, i appreciate how important common experiences are here. I hope you have found a good treatment for you. Would be great to hear how you are getting on. Flakeyhannah. I am sorry to hear you are struggling with your skin. I took acetretin and hydroxycarbomide in my younger years which didnt work (im currently 35) but was told methotrexate was my next option after that. For years i declined for fears i assume you are now experiencing (saying that, i understand from this website many do well on it) so i did nothing until it got to a point i was neck to ankle moisturising every 4/6 hours, including nights, plus coal tar, protopic etc in between. I didnt know it at the time but this had a massive impact on my mental health. Looking back i just got work done, dog walked, dinner cooked but wasnt living. When it got too much I took cyclosporine and it worked a treat and quickly but gave me high blood pressure. BP aside, which is improving, i am so pleased i re-engaged with the treatment path. I am now on amgevita (humira bio-similar) and i am totally clear, injecting every two weeks and living a normal life. I raise this only as i later read that you only need to take 2 systemics to be available for biologics when i had to wait to 3. Info from british association of dermatlogists website fyi. Perhaps you could question your options? Especially now the bio- similars are available? I would also say that i am sure our dermatologists have our best interests at heart and biologics are not to be taken lightly All the best Scc

Posted Fri 31 Jan 2020 22.52 by scc

Emma, i am really pleased your son is responding so well to treatment. I got p at 14 after my bcg jab (anyone find this their trigger). p massively affected my self worth for circa 20 years, especially as treatment was ineffective through the important years from youth to adulthood. I am pleased your son can move forwards (f* the bullies!!)
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