I am literally covered head to toe with p .. had it at a manageable point up until about 8 weeks ago when it just erupted out of control. ( Im 38 and had since I was 10) It's not just itchy... it hurts and it's impossible to move without feeling like I'm covered in papercuts. So the course of action is for me to go on ciclosporin.. I'm terrified after reading extensively about it. I have a 2 year old and work with children.The P needs some serious treatment but I'm equally as stressed and anxious about how taking C may effect day to day life. I feel stuck in a vicious circle... damned if I do damned if I don't. Has anyone got any advice... how it's worked for them and if the side effects of C can be as bad as some of the things I've read?
Thanks
Posted Thu 17 May 2018 19.58 by ClearskinPls Since 2001, tried uvb and creams
There are side affects...
Posted Fri 18 May 2018 00.21 by Rob
i have had psoriasis for over half my life (now 70 ) tried most, the doctor gave me Calcipotriol/Betamethasone Ointment on a repeat prescription around 18 months ago and although it does not cure it, it helps more than anything I tried before. I am convinced that it will be with me for the rest of my days, but at 70, I can manage it with this cream fairly successfully. I will point out that it is a steriod cream, which can bring it's own problems such as in my case, weight gain.
Posted Fri 18 May 2018 08.25 by Suzie I have suffered for around 7 years and have it covering my back and front.
Hi Elly,
I went on ciclosporin, for me it worked very quickly and the only side affects i had were tingly fingers when i was in the shower and maybe a few headaches so for me it was definitely worth it and my skin was completely clear within a couple of weeks. i was on it for about 6 months then moved on to methotrexate. i would say just try it and if you do have any side effects you can stop but for me it was the right choice.
let us know how you get on.xx
Posted Mon 21 May 2018 14.16 by Bumblebee
I am new to psoriasis but have a very severe scalp plaque type. I started on ciclosporin and on day 23 realised that the side effects were more than I could stand, an immediate trip to my GP diagnosed blood pressure at 200/126 and I normally am around 125/80. My kidney function had plummeted to 49% and I stopped taking the drug immediately but the BP has remained high. ŵI w
Posted Mon 21 May 2018 18.18 by Elly
Thanks for your replies. It's really good to hear different stories/outcomes.
I guess the only way to know is to give it a go and see what happens. The P is impacting on life quite a bit a the moment so I need to try .
Posted Thu 7 Jun 2018 21.50 by Cazzy27
Hi Elly. I've been on Cyclosporin for nearly 2 years even though it should have been 6 months! This did work well for me and I haven't had any side effects apart from the kidney function decreasing. I only have 1 kidney so they halved my dose to 100mg a day instead of 200mg. So it's not working as well now but my kidney has improved. I'm having to start on Methotrexate injections soon (I've previously had the tablets) but not looking forward to this. Have tried to get biologics but can't get the funding for this as apparently I haven't got the 'right kind' of Psoriasis! Good luck with the Cyclosporin.
Posted Sat 16 Jun 2018 20.05 by Stuart7 Hello all Nice to see a group of people helping one another
Hi all Newbie here Just started my course of ciclosporin today and im praying it helps after all the creams and ointments given to me by my GP failed
I only contracted P a year past march and had never had skin problems in my life before then
My job is quite stressful so im guessing my P came from that
Im on 2 x 100ml twice a day and i would like to know what everyone else thinks of the success rate of this drug and opinions on side effects
I started with two spots on my lower back and it spread from there. I now have lower leg and forearm scaling and my lower back is getting worse.
Any feedback greatly appreciated.
Posted Sat 16 Jun 2018 21.01 by Cazzy27
Hi Stuart7. I've had PPP on the soles of my feet about 7 years now. I have tried lots of different meds but the only thing that has really worked is Cyclosporin but they only like you on it for 6 months (so I was told). I was also on 100mg twice a day but having been on it for 18 months! (long story!) it has been reduced to 100mg once a day as it started to affect my kidney (I only have one). They have been trying to get me on biologics which was refused so now it looks like I have to go back onto methotrexate injections. There is a Forum on here about blueberries so please give that a read. Very interesting. Oh also I didn't get any side effects from Cyclosporin so it suited me quite well. It's a shame I have to come off it but the lower dose isn't working so well anyway. Good luck.
Posted Sat 11 Aug 2018 00.45 by Redgirl206 (edited Sat 11 Aug 2018 00.49 by Redgirl206)
I’ve been on cyclosporine for a week and have been “stuck” at a light pink color all over. ( I was 100% covered with bad erythrodermic flare a week ago) when I came home from hospital, I wore a sauna suit with triamcinalone for a few days. When the bad peeling went away and only had the redness n mild flaking, I stopped wearing the sauna suit. I’ve been this pink color with dry skin (looks like snow when I walk) for the last 4 days. Is this a good sign that the cyclosporine is working as I’m not getting worst ( which I did 3 weeks ago bc my Humira stopped-hence why I’m now on cyclosporine. Dr is waiting to calm me down a lil before switching to a new biologic)
Trying to get an idea as what people’s skin looked like as they started to “heal” with erythrodermic and cyclosporine. Also, how long did it take for your pink/redness to go away. What areas of your body improved first?
Thank yoi
Posted Sat 11 Aug 2018 08.14 by Cazzy27
Hi Redgirl206. Luckily (if you can call it that) my PPP is just on my feet. I can't imagine what you are going through. My feet usually stay a light pick colour but the sore bits go red. With me the Cyclosporin starts working in about 10 days but the pink colour is always there. At the moment because I've had a break for 4 weeks I have just gone back on them so my feet look like a snake shedding its' skin. They never really look normal. There's always skin coming away. Good luck.
Posted Sat 11 Aug 2018 08.28 by Elly
Hi all sorry been off radar had rough couple months of just feeling rubbish and in pain.
So my consultant has decided to bypass the cyclosporion and put me straight on Methotrexate. I have just got all clear from bloods so should be starting it in next few weeks. He prescribed me the enstillar foam to use also which I have to say is bloody amazing! I have it on repeat prescription but amount is limited each month. It's made a huge difference to me. Feeling anxious about starting the methotrexate but I know it's the right path forward to gaining back some control. X
Posted Sat 11 Aug 2018 09.18 by Cazzy27
Hi Elly. Will the methotrexate be tablet form or injections? I will be starting on the injections soon as the side effects of the tablets weren't nice for me so will be interested to know how you get on.
Carole
Tablet form to start heard the side effects can be awful so will see how we go. Have a 2 year old at home so I'm hoping I can manage ok with work alongside. I'm normally a well person so hoping it's not so bad x
Posted Sat 11 Aug 2018 21.29 by Cazzy27
Hopefully you'll be ok. When I was on them I felt nauseous for 3/4 days after taking the tablets so there wasn't a lot of respite before the next lot of tablets were due. As they say, everyone is different and with a 2 year old you can't afford to feel like that. Good luck.
Carole
Posted Mon 13 Aug 2018 16.41 by Annie
Hi,
I was on Ciclosporin for 7 years (I know, far far loo long but that's another story). I found it really helpful and they worked really well in managing my pretty muck full body psoriasis. The only real side effectsI can remember was the feeling very nauseous a few hours after taking the tablets, but this wore off after about 10 mins or so. After a few months it stopped or at least I got so used to it maybe that I stopped noticing.
Hi looking for advice/experience
I started cyclosporine 100mg tablets twice a day 4 weeks ago. Helping my skin however feel I am suffering with side effects. Initially tingling in my fingers and hot aches which seem to be calming down. However over the last 2 weeks I am struggling with a tight feeling in my chest, maybe a little out of breath like I can’t take a deep breath. I have seen both my gp and the consultant dermatologist regarding this and all bloods etc are fine. This resulted in a reduced dose to 75mg twice daily.
I feel so tired also, which is not like me.
Please help has anyone else experienced this? And if it settles how long does it take to settle?
Trying to weigh up if I can continue taking the drug ??? !!!
Thanks toni xx
Toni: I’ve been on cyclosporine for 11 days and I’m also struggling with fatigue. I find that I’m tired until about 3pm and then I get a surge of energy but back to being exhausted. I also feel this way after a meal so I’ve been trying to eating lighter. Another side effect that I’m having is a very slight annoying headache around my eyes. My skin is almost clear but I don’t have my first follow up with my derm until Friday. I’ve been checking my blood pressure. It was slightly elevated (125/85) the other day so I’ve focus my diet around food to help with my blood pressure...i figured it can only help with my fatigue. Eating berries, white meat only, lots of greens and reducing carbs, sugars and food filled with preservatives. The first few days I was in it, I would sleep 10+hours at night and nap another 2-3 hours during the day. Stay active and try to be outside...I find that helps but as soon as I walk in the house, I’m done. Just have to push through it I guess.
Best of luck to you.
Posted Fri 7 Sep 2018 10.23 by Clarasere
Hello Elly, how are you feeling with ciclosporine? I am more or less like you and all of the people in the group. I am not feeling good... but waiting after ciclosporine for metrotecxat. I had Infleximab 6 years ago when I lived in Spain and it was very good for me.
I am in the preocess now of ciclosporin, then methrotexat and then maybe infleximab again.. let's see hoy M. works...
Nice to be part of the group, sometimes I feel that this is happening only to me. I have a lot in my back, body, legs and every week my skin change like and do the same process... I have generalized pustular psoriasis and I had Impetigo herpetiforme in the last three monthes of the pregnancy, nothing worked at that moment but after having my baby I had Infleximab and it was very good. I that case is was the hormones causing more and more psoriasis. Now I don't know,,, a mix og things,,, I just have the ilness in my body...
Thanks,,,
C.
I am on Methotrexate rather than ciclosporin as he felt I needed something more long term. Been on it a couple weeks and been tired and experiencing some nausea but it's early days to see how it's working x
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Posted Thu 17 May 2018 19.51 by Elly
Posted Sat 16 Jun 2018 20.05 by Stuart7