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

[RockinD]

This stuff was originally created to stop the body rejecting transplanted organs.

If your eczema is not responding to the standard 'medical' treatment, you might want to put up with it for a while longer while you look at possible dietary triggers and the like.

My DD's eczema was bad enough as a toddler for them to want her as a hospital in patient, but we found the dietary triggers and kept it pretty much under control thereafter ( as long as she stayed away from pineapple!).

Remember that it is your health and no-one can force you to take anything. You have a choice and if you choose not to take powerful meds and deal with the disruption to your schedule (and increase to your stress levels) that goes with them, then that is your choice.

Personally I would start by ensuring that nothing with sodium lauryl sulphate in it goes anywhere near your skin and go on from there.

[seoda24]

Thanks for answering. Well nothing has been explained to me yet and I thought the suggestion of these tablets was rather extreme as I know I am bad but can go for a while with being okay if you know what I mean.Reading up about these tablets I fear that the dangers outweigh the benefit. Thanks -and glad your daughter is doing well again

[Londonderrysue]

The list of side effects with cyclosporine is endless, but most of them are rare. I was on it for two months in an attempt to save my colon, but it didn't work! The side effects I had were peripheral neuropathy, my gums grew, and I grew black hair everywhere, and horrible nausea. I didn't have weekly blood tests, but they did check the cyclo levels to check that they weren't too high.

I don't look at the side effects for drugs, they have to list evey possibility and most are very uncommon. The booklet that comes with Cyclo lists them by 1in 10, 1 in 100 etc. I was once prescribed a drug that was designed to treat leprosy, was being used off licence for vasculitis, and it had death as a possible side effect!!

The main thing about Cyclo is that you can only be prescribed a named brand, you can't mix brands, and it's very expensive. Mine was around £500 a month, my GP was very happy when I stopped it!

[seoda24]

Oh Thanks.Oh those side effects you experienced sound awful.I dont know if I could continue to work and put up with all that.she mentioned being on them for one month and off for the next

[seoda24]

Anyone else experience of immunosuppressants for eczema?thanks

[HarlotOTara]

Hi, I have a friend who has been on cyclosporine for psoriasis - he has regular tests for kidney function but the side effects aren't too bad for him, it has kept his really dreadful psoriasis under control. Actually I think the side effects are so minor I can't think what they are. We are very good friends so I would know if they were bad. Good luck

[poachedeggs]

I doubt this is any reassurance at all but I am a vet and we use cyclosporine for atopic skin problems as well as a few other conditions. Side effects in dogs are very, very rare in practice, in my experience. I don't hesitate to prescribe it in severe cases - it's better than steroids.

Having said that, if you feel you haven't exhausted things like dietary management then in your shoes I'd check that out first.

[seoda24]

Thank you both for taking the time to answer.Glad to hear your friend is doing well, that is good to hear.Yes I am like the animals you treat !! as i am also atopic.I have been on steroids 5 times over past year and I suppose they feel they need to move me in at this stage.I have read up a bit about these tablets and all I can find is pages and pages if side effects so got myself in a right state if worry.As I have a busy job I suppose it is the practicalities of taking time off work for all these appointments for blood tests etc that will be a determing factor also.I will weigh up everything.I am still at the stage of identifying what creams I can and cannot use after having numerous allergy tests.My specialist is a long way ahead of me in her plans and not too sympathetic to my queries unfortunately.Many thanks x

[MsFanackerPants]

I was on cyclosporin for about 15 months due to severe eczema. I'd been on steroids previously but they'd not done much to clear my skin. I had to go for regular blood tests (weekly I think) and be super vigilant with applying sunscreen. I also had to ensure my contraception was damn good.

It did work for me. However I had a lot more coughs and colds which was a pain and my work place weren't massively supportive about it.

I had no other side effects. Some years later my eczema flared again. That time I was given azathioprine which also worked wonders.

I'm pretty much eczema free now except in my elbows and wrists when very stressed. Diet played no part for me. The drugs were scary but changed my life.

[seoda24]

Thanks for info.Tell me do these blood tests etc take place with specialist you are seeing or with your own doctor?just thinking of time of work etc.could you function at work taking them or were you sick a lot?sorry I have so many questions around the whole area and when I look at photos of side effects I feel like crying!!thanks

[MsFanackerPants]

I went to the phlebotomist in the dermatology department at the hospital. The main issue was travel time as I don't drive. Once i was stable I went less often. Just monthly I think.
I was on a different drug later I had my bloods done by the practice nurse at my gp. Took 5 minutes.

My main side effect was getting coughs and colds frequently. It was actually less of a problem with work than constant infections in my eczema and impetigo. And I was sleeping muxh better as I wasn't scratching all night I felt ok apart from a runny nose. I do have hairier legs and pits now but I have no idea if that was age or a side effect.
I took neoral. My main memory is that it was quite a large grey capsule and smelt a little strange. If necessary I'd take it again. It was less problematic than the steroids that's for sure!

[IslandMoose]

I take cyclosporine and have done for over two years' now - in my case it's to stop a transpalnted organ from rejecting.

Blood tests were very frequent for the first 12 weeks or so in order that the dose could be fine tuned and made consistent in your system (i.e. to have a constant level in the blood rather than a big spike followed by a big dip), but once that was sorted then frequency of testing reduced. I now only have bloods taken every three months or so.

The only side effect I have experienced has been hair growth - specifically on my back, where I now look like a werewolf in-between waxes.

I think it's great - but then the alternative for me is significantly unattractive.

Best of luck.

[noddyholder]

I was on it for years but eventually stopped it due to effects on my transplanted kidney. I switched to azathioprine and had another 4 years but the function didn't recover. With my 2nd I said no from day one and had azathioprine and this one has lasted 13 yrs I had teeth problems and eyes too so I would seek an alternative if you can but that is just my experience and it is a life saver if you have no other choice.

[seoda24]

Glad ye are all enjoying good health again, that is the main thing.My problem is I am not convinced my eczema is that bad for the need to go on them.I can go to work and continue with my daily routine but the applying of creams, numerous tablets for bad flare ups etc is like another life I lead.Plus , I am a very bad and scared patient which does not help so these tablets sound like the really serious ones compared to the allergy tablets I am currently taking.That is a big step forward to think about.many thanks everyone for help x

[HavingALittleFaithBaby]

A MNetter I know very well has been on cyclosporin for a long time on and off for psoriasis. I've told her about your thread and she'll pop in later to advise you of her experience later today.

[seoda24]

You are so kind!thank you so much xx. Really appreciate that

[HavingALittleFaithBaby]

Tis no problem. I think her response will reassure you :)

[cjbk1]

yes I'm on it for atopic eczema for which i

[cjbk1]

have been hospitalised in the past and had failed light treatment been off work a lot and steroids have stopped working, tried everything topical, plus hypnotherapy acupuncture and chinese herbs(not all at once) been on cyclosporin this time for quite a few months and I'd be very reluctant to come off it! I'm not of course comparing myself to a transplant patient but yes it's changed my life and side effects are only mildly hot hands a few hours after taking a dose and slightly raised cholesterol which is within normal range. I cannot manage my eczema without drugs iv tried everything

[cjbk1]

• severe

[seoda24]

Glaf it is working for you.I have had a dreadful year with atopic dermatitis and am sometimes taking steroid tabs, allergy tabs, antiviral as well as numerous steroid creams for flare ups (including recurrent herpes around eye) nasty...i am to decide if cyclosporine is my next route...tell me dis your specialist take full responsibility for monitoring blood tests etc?would prefer that as my own doctor is hit and miss at best if times especially my skin problems and not sure if she would be consistent at monitoring a strong drug like this.many thanks

[cjbk1]

seoda24 without giving you a blow by blow account of my eczema ; I took myself to my private dermatologist iv seen for years as GP doesn't take eczema seriously and she ordered all tests and investigations then she referred me to herself in the NHS (my GP wasn't impressed) so the same thing happens on the NHS now, there was quite a bit of confusion about which tests which day last visit so it took ages...x

[roundtoit]

my DS [28] was on it, 1st app with consultant was complete blood test , then when he was on the tablets he saw consultant monthly for 2 months, first to nurse for blood test then 15 mins later saw consultant, he had a little book where all the results were written. after 2 months only saw consultant every 12 weeks, the list of side effects is horrible but if you look at any drug they are all the same long long lists of possible side effects, my DS had none his skin was great on them and he decided to come off them after 12 months, his skin flares up now and then but not like it used to before his had these tablets. When DS told me about these tablets i panicked and thought my god but i was talking to a pharmacist one day in Boots and he put my mind at rest, as his brother was on them and he said its a proven method of treatment these days and not to worry.

[2madboys]

My DS (about 8 at the time I think) had an 8 week course of this after pretty heavy duty steroid treatment had failed to control relapses of a kidney problem. He did have weekly blood tests for liver function, which were sometimes done at our gp and sometimes at the hospital. It does sound pretty scary, but he had no side effects that we're aware of and they did the trick and knocked the kidney problem on its head. I'm sure you'll be fine.

[MadHairDay]

My DD is only 12 and on 100mg cyclosporin twice daily. I was terrified like you when I read about side effects, but her psoriasis was so severe we needed to do something - it was all over her, big bleeding scabs, she was getting teased at school and in pain a lot, the works. We tried creams, then IV treatment, neither worked on their own so her dermatologist put her on cyclo, a low dose as she weighs so little.

She's absolutely fine, and her psoriasis is more under control than it's ever been. Only effects I've noticed is she is hairier - she had no pubic hair but it's suddenly grown so I think it's the cyclo rather than simply puberty iyswim - her legs are also hairier. She's had no problems with coughs, colds etc - she's incredibly healthy in fact.

I hope this reassures you. One thing her doctor said to me that if she gets a temperature to take her straight to the doctors because of compromised immunity. She only has blood tests once a month now (she had them once a fortnight at first) which coincide with her dermatologist appts.

I'm honestly so pleased she's on them because they've changed her life, literally.I know there are still risks but they need to be balanced with what you are living through now.

Hope things do get better for you. Skin diseases are so horrible.