Coclosporin

Posted Mon 26 Sep 2022 08.37 by Rads68 (edited Mon 26 Sep 2022 08.38 by Rads68)

Been offered Ciclosporin as an alternative to Mtx. Can't find any info on it on this forum. Anyone with any experience of it? Thanks in advance.

Posted Mon 26 Sep 2022 08.38 by Rads68

Sorry, Title should read Ciclosporin, obviously

Posted Mon 26 Sep 2022 16.03 by Steview
A P sufferer for over 30 years, through good and bad times.

Click on the search for 'cyclosporine' , plenty of posts. My experience was really effective. Only on it for nine months as it is a short term med. I did suffer various side effects but managed those for the benefits it gave my P.

Posted Mon 26 Sep 2022 16.24 by Rads68

Thanks for that. I’ve searched for Ciclosporin on here but only found about the treatment, not people’s individual cases.

Posted Mon 26 Sep 2022 17.21 by Rads68

Apologies. I’ve found the posts.

Posted Fri 30 Sep 2022 17.08 by Yvonne42

Hi I got started on cyclosporin 2 weeks ago after 3 days of taking I have a numbness in my Whole body, no sensations at all. Went to A&E was told I have a water infection and prescribed antibiotics. Tha day after managed to talk to my specialist who told me to take the antibiotic and wait 5 days and to start a lower dose of cyclosporin so from 200mg a day to 100. However the feelings in my body have still not returned and don’t know what to do

Posted Tue 11 Oct 2022 13.49 by Tracyjane

Yvonne, How are you feeling. Have your side effects settled now. My 14 yr old son has been prescribed cyclosporine. We haven’t picked up the prescription yet. X

Posted Tue 11 Oct 2022 14.40 by Yvonne42

Hi thanks for your reply. I’m still touch and go with the side effects. Got blood tests tomorrow to see if they can see what’s been going on but I have still not started the medication, refuse to after what happened and not sure what is still going on. Hopefully will start me in biologics next. It’s crazy really because I’ve never had a doctor ask me to take medication I have had a side effect to before. I hope your son gets on better than me x

Posted Tue 11 Oct 2022 16.13 by Tracyjane

Yvonne, I hope so too. Oh what a worrying time. I was assuming that they were safe enough for short term use at least. He’s only 14. He’s had psoriasis for 3 years now continuously he meds a break 😢 I hope you get things sorted for yourself soon x

Posted Thu 13 Oct 2022 09.45 by Fletch

I was on cyclosporin for several months started on 400mg a day and it cleared up my psoriasis which covered 50% of my body at the time completely, but I had to drop down to 200mg a day as it messed with my kindney (or liver I can never remember which). So then my psoriasis came back but not as bad as it was before just on my back really. The real down side to cyclosporin is that it can only be used for about 1 year max so its a short term solution. (Now starting on monthly injections going forward)

Posted Thu 13 Oct 2022 10.24 by Tracyjane

Hi Fletch yes this really baffles me why they don’t put you in other meds if cyclosporine can only be used for a year why not just give something that you can stay on. I’m very worried about the bad side effects on my 14 year old but I must do something now that it’s on his face x

Posted Thu 13 Oct 2022 10.56 by Yvonne42

Hi Tracey this was my thoughts too, they did put me on methotrexate until I started to have side effects and then took me off them and left me for a over year with nothing until my skin got so bad on my hands and feet they decided to start on cyclosporine and like you I thought why not start me on biologics if u can only stay on this drug short term. The shocking thing was I asked if would have to wait for my skin to have more than 10% psorasis after stopping cyclosporine before being offered biologics and she said that’s how it should work. Why put you in something to clear it up to make you go through it all again? Please keep us up to date how your son gets on as it must be so worrying for you. Will keep you updated when I next speak to my dermatologist ogist xx

Posted Thu 13 Oct 2022 10.59 by Yvonne42

Hi fletch I hope the injections work for you so glad you have finally been offered them. You would think with 50% of your body shy would have give you these to start with. Let me know how you get on x

Posted Thu 13 Oct 2022 12.48 by Rads68

After starting this discussion, I went to my Derm consultant yesterday. All bloods and chest x-ray were clear so all good to start MXT or Cyclosporin, my choice. After reading all about potential side effects of both and doing loads of research, I told her I'm going to make some significant lifestyle choices first before comiting to systemics. I'm cutting out alcohol, just maybe the odd glass of wine on occasions, eating 20 blueberries a day, Intermittent fasting, no nightshades (peppers, potatoes and tomatoes) and more importantly for me, I think, investing in seeing a private counselor as I know stress is a huge trigger for me. If I see god skin clearance the I'll gradually change out one at a time to see if I can find the major trigger(s). Follow up appointment in 3 months. Watch this space.

Posted Thu 13 Oct 2022 12.54 by Yvonne42

I done the same cut out night shades, cut down alcohol, quit a stressful job. Eat more healthy but my skin was getting worse than ever so had no choice. But we are All different. Wishing you all the best x

Posted Thu 13 Oct 2022 14.18 by Rads68

Yvonne42, That's interesting you didn't see any benefits. At least if I end up on med's I can't say I haven't tried everything else

Posted Thu 20 Oct 2022 13.43 by Rads68

Yvonne42 I'm only 2 weeks in with clean living and intermittent fasting too. So far I've more P spots than I've ever had. Really was expecting great things optimistically. Will keep trying but so far looking like the systemics will get to me.

Posted Thu 20 Oct 2022 14.01 by Yvonne42

Hi I had exactly the same. Changed my lifestyle completely but psorasis was just getting worse. Dermatologist on holiday this week so still waiting to speak to her as bloods and urine came back clear so was defo the cyclosporin that gave me the terrible side effect. Keep trying until you know you need more help x

Posted Thu 20 Oct 2022 14.15 by Rads68

Shame. You probably thought lifestyle changes would be a miracle cure just like me. I may as well go back to drinking at this rate.

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