Cyclosporine Tablets / So scared. Please help

[seoda24]

Hi all, it has been suugested to me by my specialist that I may have to start on these tablets as soon as possible for severe atopic eczema which is not responding as well as it shoud be to the steroid creams. Now nothing has been discussed yet. However, I googled these tablets today and am now in a state of panic having read about weekly blood tests, liver function tests, blood pressure tests and not to mention the endless side effects which have scared the LIFE OUT of me. These tablets sound serious..... Do I put up with misery of eczema or go down this route which I do not like. Then again maybe I have read up too much today. By the way I have a busy, demanding job so where do these appointments fit in on a weekly basis? Is a gp involved??Any help please so I know what my lady specialist is on about next visit. Thanks xxx

Feeling a lot more reassured now and thanks everyone.i just feel my doctor is not in tune with my skin problems and am apprehensive about her role when starting these tablets...i feel silly like a nuisance asking specialist so many basic questions I must be annoying...anyway glad to hear some positive stories amidst an eczema nightmare!thanks everyone x

Hello op havealittlefaith has directed me to your thread. I see you have lots of advice :)

Ciclosporin has been my preferred drug of treatment for severe psoriasis for the best part of 8 years - I've suffered for 20+ years and to cut a long story short I've tried pretty much everything conventional and natural remedies have to offer. For me its absolutely brilliant and I couldn't be without it - I recently restarted it after a disastrous trial of a new biologic drug.

I guess I've become a bit blase about the side effects - I take 125mg twice daily in tablet form - tbh I barely notice them! I get the gum overgrowth (minimal) and funny feeling in my fingers and toes (usually goes after a few months taking it). Sadly no decrease in appetite! Slight headache and fatigue in 1st few weeks but that went too.

I don't really get more colds than anyone else in my family although if I do get ill it does floor me slightly. Saying that my sickness record is no worse than anyone else I work with. My GP surgery is brilliant - if I feel something developing I can call them at any point in the day and they will always find me an appointment to be seen (magic words being "i take immunosuppresants!")

Blood tests wise I've been on it so long now I only have one once every 3 months routinely.

I also was a bit of a guinea pig and took it throughout my pregnancy 3years ago - I was monitored more closely and had fortnightly growth scans to check all was well. Ds was slightly small (6lbs 8oz) but has not shown any ill effects at all.

Like everything they can't be totally sure what the very long term effects are but tbh I take that risk because my skin is so bad it makes life a living hell and ciclosporin makes it all better. You'd have to wrestle it off me now!

Colleysmill, thanks so much for popping in and being so helpful.you have explained it all so well? It is good to hear it has been so successful for youband you are happy with the result.My specialist mentioned a month on month off so not sure what way she is thinking as she only mentioned it to be discussed again very soon.I had never heard of these tablets before or what their role is so this is most informing.Again thanks for taking the time and when and if I start on these, I sure I will have plenty of questions here!!thanks xx

That's ok :)

It's perfectly fine to ask lots of questions and to be apprehensive - when I started down this road 10 years ago I was too. It felt very drastic but what I didn't realise quite how bad a state I was in until the meds kicked in - physically but also emotionally. The psychological impact of living with a skin condition often can be overlooked but really shouldn't be underestimated.

Very tue.I am beginning to wonder does my specialist really get the psychological impact all this has...Only those who live with the ups and downs really know

Hi Seoda24. I was reading through your posts as I am in a very similar situation to where you were in 2013. I also am atopic and have had eczema and allergies for 20 years now. Sometimes I can live with it, sometimes when I have a bad flare up I have to stay hidden at home and it all feels like too much. I have been off and on oral steroids and have used steroid creams and tacrolimus almost constantly for years and years. My specialist wants to put me on a 3 month course of cyclosporine but like you were, I am terrified by the side effects and think maybe my eczema is not bad enough to justify the risk. I have bought it and have been sitting looking at the box for a week now but am too scared to start!! So I wanted to ask you, did you go ahead and start taking it and how did you find it? Also do you know if it can have long term effects on controlling eczema even after you stop taking it, or does everything go back to normal once you stop it? I'd really appreciate your feedback. Thanks alot!

Hi there ! Good to hear there is someone like me!I just stumbled on this thread by chance tonight as I like to watch the eczema/allergies chats.Well I had to read over how I was back then.Cutting a long story short, I too did not think I was bad enough and weighed up the pros and cons ....However, it was suggested again at my last appointment to keep in reserve in case it gets bad again.Currently doing well .A Kenalog injection for allergies was given to me a few months ago and my skin settled .Im finding if it's not my skin well then it's nasal/ wheezing something acting up.My skin is doing very well with a very strict regime I'm keeping to.Are you under the care of a Dermatologist?I presume you are if they want you down that route.I was just too scared at the time and like you it's kept on reserve.The side affects scared me....Poor you .I hope it works out

Thanks so much for replying! I thought you might not see my message. Yes really good to know there are other people around who know how I feel, although I wouldn't wish this awful disease on anyone! What is the strict regime you are on? I eat extremely healthily and take lots of vitamin and mineral supplements (I see a dietician) and try to get enough sleep, not get stressed (not always possible when you have kids ad a job, I am sure you know the feeling!), put on emollients 1000 times a day etc. This does all really help but I at least always have a red face with some sores even when using steroid creams. My dematologist referred me to an allergy specialist who said I have to stop using steroid and immunosupressant creams on my face as I have over used them, and also get off oral steroids (which I am off and on the whole time) which is why they want me to use the cycosporine for a few months, to have a break. But like you I am just too scared of the side effects. So I will remain in limbo for the next few days without any medicines and just see what happens! I'll probably end up desperate for the cyclosporine after that! Have you ever thought about immunotherapy (where they vaccinate you against what you are allergic to)? I am looking in to this. Kenalog is a steroid isn't it? I'm glad it has worked for you and hope you continue to be well.

Thanks so much for replying! I thought you might not see my message. Yes really good to know there are other people around who know how I feel, although I wouldn't wish this awful disease on anyone! What is the strict regime you are on? I eat extremely healthily and take lots of vitamin and mineral supplements (I see a dietician) and try to get enough sleep, not get stressed (not always possible when you have kids ad a job, I am sure you know the feeling!), put on emollients 1000 times a day etc. This does all really help but I at least always have a red face with some sores even when using steroid creams. My dematologist referred me to an allergy specialist who said I have to stop using steroid and immunosupressant creams on my face as I have over used them, and also get off oral steroids (which I am off and on the whole time) which is why they want me to use the cycosporine for a few months, to have a break. But like you I am just too scared of the side effects. So I will remain in limbo for the next few days without any medicines and just see what happens! I'll probably end up desperate for the cyclosporine after that! Have you ever thought about immunotherapy (where they vaccinate you against what you are allergic to)? I am looking in to this. Kenalog is a steroid isn't it? I'm glad it has worked for you and hope you continue to be well.

Will send you a PM if you like (try to first attempt...)as it may get a bit boring for others!

I was under cyclosporine for a year to treat an eye inflammation. Initially felt a bit ill but the body adjusted to it after a few weeks. You will need blood tests regularly which should tell you something is wrong, but overall I felt fine. Unfortunately my treatment didn’t work so we switched to
someThing else.

Blimey the thread is from 8 years ago! I didnt read the date obviously 🤣