Help needed for Ciclosporin
1
Posted Sun 21 Jan 2018 16.10 by DodgeWC51
Very slowly! The dose needs to be cut down over a number of weeks. Expect the Pssorias to flare up again. Talk to your dermitologist. I can understand why you want to come off, I didn't want to have to take powerful drugs for the rest of my days. Unfortunatley for me it didn't work though I'm now on Methotrexate, and hope to be on the biological form soon.
Posted Mon 22 Jan 2018 19.06 by Anand Rastogi
Thanks for reply,
i have been suffering from psorisis since 2011. Initially i was taking Methotrexate. but in month of Dec 17 my doctor replace this with cyclosporine along with aprezo tablets. Aprezo tablets have no any significant side effect. So i am planing to stop the cyclosporine and only take aprezo to control the psorisis.
1
Posted Mon 22 Jan 2018 19.14 by DodgeWC51
I had a couple of months lowering the Cyclosporin and upping the Methotraxate, which fortunatley apart from the odd bit of itchiness, has had no side effects. Doesen't seem to work quite as well as Cyclosporin, but hopefully it will balnce out. I've had Psorais all my life, my Mother had it as well, never a problem in 59 years till the last couple when it went crazy and I ended up with Erythrodermia.
1
Posted Tue 23 Jan 2018 04.54 by Cazzy27
Hi. I am also a newbie to this forum. I've had PPP for the past 6 years. Have tried everything and the best thing so far has been Cyclosporin. I've been on it for about 16 months at 100mg twice a day. Although now they have reduced it to 100mg once a day as my kidney function started to decrease with each bloods done. I only have one kidney so I can't afford to lose this one. So I now have really sore cracked feet and can't walk far. I have been turned down twice for a biologic drug as apparently the psoriasis wasn't covering my body, despite the fact I couldn't walk! They are now trying to get funding for me to go onto it but not holding my breath. So if I do get to go onto this drug will it work? Is there anyone that is on a biologic drug that could give me any hope.
Posted Wed 11 Apr 2018 11.17 by Bethkin
Hi there.
I have got PPPP on my hands and feet!
Just read this post and you guys are giving me so much hope! I started cyclo yesterday and am on 250mg daily (100 morn, 150 night)
I have been on the PUVA treatment for about 6 months with no effect on my skin at all so they’ve decided to start me on this.
Today I’m feeling a little sicky and dizzy? Is this quite normal?
So glad I found this website so we can all share experiences! It’s made it so much better for me realising I’m not the alone in the world suffering with this awful condition!
This condition has certainly been debilitating me, struggling with work (as I’m on my feet all day) and unable to do basic things like cook a meal or have a shower from the pain in my feet! I’m 25 years old and other treatments have obviously been declined due to being child bearing age (although that is certainly being put on hold until my feet are better!!)
Just glad that I have someone to talk to about this who understands!
Will keep u updated with my progress :)
Posted Wed 11 Apr 2018 21.23 by DodgeWC51
Welcome in. It does take a while for the body to settle down. Your immune system has been busy working at full stretch and now your hitting it with a brick. Cyclosporin is very powerful, so yes it will make you feel a bit strange, hopefully this will settle down. If you have any doubt, go to your Doctor or contact the dermatologist straight away. You will no doubt have a season ticket at your local phlebotomy clinic. First thing it is not an overnight miracle cure, no sugar coating it can make you feel rough to start with.BUT, big but, and the whole point - it works! In my case, and I had whole body erithroderma, it was a life saver. Keep a careful note of any side effects and stick to dosage times! That is important as the stuff has a 12 hour half life and you need to keep the dose maintained, miss by a couple of hours and you can feel quite sick. I found it better to take after eating something. It may take a month or so to see results but they are dramatic. Drink plenty and don't be afraid to have a good moan here, makes you feel better and we all know what it's like.
I had to take it for about 18 months before weaning off it to Methotrexate. That has worked well for me , but I'm past breeding age, for which the world should be thankful .
Treatment is developing all the time so don't give up hope.
Posted Wed 11 Apr 2018 21.44 by Bethkin
Thank you for the quick response.
I’ve only been in it 24 hours now (yesterday morning being the first time taking the medication) and I don’t know whether it’s possible but the pussy spots I had on my feet have cleared up and my feet are already looking alittle better? Is that possible?
I try and take the tablets at 8am and 8pm and with food for definite but the nausea is awful! I constantly have felt sick all day today and also it’s made me really tired! I had to go for a nap this afternoon and ended up sleeping for 3 hours! Something I never do! Is this quite normal to begin with?
So great to speak to people who have experienced the same. Really gives me abit of HOPE with this condition! :)
Posted Thu 12 Apr 2018 04.35 by DodgeWC51
I'm afraid so. Initially it did knock my sleep patterns about, Fortunately I wasn't to nauseas,
As you will know the list of side effects is long, and initially frightening, Sounds like it is working though. Don't forget. you are seriously ill. Even if most people don't understand how serious it can be.
Posted Fri 13 Apr 2018 22.02 by Heidiloobylou75
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
Posted Sat 14 Apr 2018 06.46 by DodgeWC51
Heidi, I know the feeling. I ended up off work for about 6 months and a year I'd rather not go through again. I was given one bit of good advice by a friend though 'What do you expect? Your body is at war with itself. Unfortunatley there isn't currently an instant magic bullet. Don't try to come off straight away that is very bad news, belive me . Talk to your Dermitiologist, though most of them don't actually have to go through the treatment, we do, so I can understand . It took the best part of a year for mine to settle down then mixed Cyclosporin and Methotraxate tablets, now onto Methotraxate tablets alone.. Keep with it, it is worth it in the end. There is a new website Ask For Clear Skin, it's run by a commercial company, so for us that know, it's a bit of a joke but does have some useful links to NICE guidance for treatments.
Posted Sat 14 Apr 2018 10.47 by Bethkin
I’m so sorry your feeling like this too Heidi! I would recommend speaking to your dermatologist to see if there’s anything else u can go on if your not reacting well to it!
I am on day 4 of cyclo. Still feeling really nauseas but the good news is... my feet have already cleared up I’m so surprised!! However I am still in absolute agony with the cracks in my feet and I’m still finding it difficult to walk but all the pussy spots have gone and there actually going pink instead of always being red!
I’m so shocked at how well they look and I’m hoping this isn’t a fluke!
Best wishes to u all!!
Posted Mon 18 Jun 2018 17.21 by Holly1
Has psoriasis since 2001
Hello hope everyone is doing well! Iv started anoth round of cyclosporine this time it's taking longer to clear and still having a couple of flare ups...
My daughter has just got chicken pox I have already had this as a child but wasn't sure where I'm on this medication whether I should do anything or whether this could affect me in anyway. Does anyone know?
Posted Mon 18 Jun 2018 20.39 by OhNo_NotAgain?
Holly1: I would strongly recomend you contact:
- your GP practice (I can get a same day phone call back to answer questions like these)
- NHS Direct 111 helpline
- your phamacy who dispensed the cyclosporine.
Posted Tue 19 Jun 2018 12.31 by Holly1
Has psoriasis since 2001
Ah thank you didn't want to sound silly ringing up asking. Just called gp and they will call me back this afternoon. Il update the thread once I know incase it helps anyone else ☺️
Posted Tue 19 Jun 2018 14.55 by OhNo_NotAgain?
Hi Holly, it sounds like a perfectly sensible concern and question to me. I think it is good that you even thought about it.
I would be surprised if there is any significant problem, but it is sensible to ask.
I would definitely rely upon advice from your GP or similar, rather than from strangers on a forum :-)
Even when you read a post along the lines of "I tried xxxx and it cured me completely", you have no idea who is posting or how accurate their post.
Posted Tue 19 Jun 2018 18.01 by Holly1
Has psoriasis since 2001
Thank you! I make you right with those types of posts as well. Appreciate your help ☺️
I spoke to gp who said that by being on this medication I could catch chicken pox again. However he wasn't sure whether to prescribe me I think anti viral meds to combat the chicken pox in advance or not without seen my latest bloods so just waiting to hear back from the consultant now. But either way DR said to call if I see a spot show as then I would have to take these extra meds as apparently getting chicken pox whilst on ciclosporin can be quite dangerous. So I'm on spot watch now until I hear back from consultant.
Thanks for your help
Posted Tue 19 Jun 2018 20.38 by OhNo_NotAgain?
Holly, I am pleased to hear that your GP was helpful (and responsive). It was definitely a good thing to think about and to ask. Best of luck.
Posted Wed 20 Jun 2018 00.19 by ScottishGirl
Had psoriasis for 15+ years
Hey guys, ive just started on ciclosporin today, it’s strange because this morning I had taken my first dose which was one 100mg and a few hours later had a bath and it was like I had frostbite in my toes even though the water was just nice. I’ve read through the majority of the posts here and I can see people have had similar issues. It’s just strange because I had only taken one tablet on my first day it’s not like I’ve been taking it for weeks or anything. Did anyone else experience side effects after the first tablet? I’m really hoping it helps because I’m at my wits end. Sometimes I feel like just taking a sharp knife to it and cutting it off and hope my skin heals back to normal skin. I know that makes me sound crazy but that’s how desperate I am....
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