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Severe eczema

Discussion in 'Health and wellbeing' started by Nels, Jan 18, 2011.

  1. Have no experience with immuno suppressants for eczema but one of my daughters had a severe flare up covering her body and legs about 5 years ago that took a year to completely clear up. Have you contacted the National Eczema Society for advice? We paid for an initial private consultation with a specialist and then went back onto the NHS, she had patch tests to find triggers that we were unaware of, trial and error got us eventually to finding a few creams that worked well, also aloe vera and dry wrapping.
  2. My brother was for a while (think it was cyclosporin he was on) - his had got so bad it was pushing the family to breaking point and so they decided to go down that road to give his body a break from it, and my brother a break from things as well. They worked for the time they were prepared to leave him on them, obviously there's some pretty hideous side effects they had to monitor for, and as a side effect - because his body wasn't so busy constantly fighting with itself over his skin - he grew about three inches in height over the time he was on them (he's on the shorter side of things as an adult and one reason is the toll eczema took on his body).
    I feel for you because I know just how bad it has to have got for them to consider starting you out on this route.
  3. I completely feel for you and know exactly what you're going through [​IMG]. I've suffered from severe eczema from a young age and it got a lot worse as I got older, especially on my face and neck. Eventually, after years being plied with stronger steroid creams/immuno suppressants and trying every diet etc under the sun, it got so bad one night that I went to A&E (I looked like a burns victim from my face down to my tummy). They didn't know what to do with me so put me on a steroid drip until I turned a normalish colour. They also gave me oral steroids (the same strength and dose my friend had been given to stop his new kidney rejecting!!). After I'd stopped taking the steroids my body gave up and I was basically an open wound from my face down to my knees.
    In desperation, I went to see a Chinese medicine doctor (if you're interested feel free to PM me as it's hard to find a genuine one!) a friend had recommended. He told me that my eye lids were so shot to bits with infection that I could have gone blind and suggested I stay inside the house until I get better. I had to boil up a selection of herbs prescribed and drink as a tea (tasted rank but did the job).
    After 6 months signed off work I got well enough to combine my medicine with the odd use of immuno-suppressant ointment. 4 years later and I'm leading a normal life. Just the odd patches on my face and every now and then on my arms and neck.
    I get SOOOO angry with the restraints of the NHS on treating eczema and the fact that many GPs just will not admit that they can't offer anything decent. Instead they pump us full of immuno suppressant **** until our body gives in and we get really ill.
    Any way, sorry for the big rant but your post really struck a chord. If you'd like any more info about the Chinese meds than please feel free to PM me.
  4. Thank you so much for your replies, at least I'm not alone. Lots of suggestions here, and I intend to reply to you all. I'm not very computer literate and need some advice how to pm you all. I'm already a member of the eczema society, but there's never any mention about the use of immunosuppresants to treat eczema. Thankyou all so much [​IMG]
  5. It took me a while to work that out too! You click on our name and then on our profile you click on 'send a message'. [​IMG]
  6. I think it's quite a rare way they treat it as a last resort - and I know my brother had been through cream after cream, steroids, sun treatment and even hypnotism before they tried it with him - mainly as the family was at breaking point with it all (my mother had to have him in her bed with her to try to stop him clawing at his skin all night so she had no sleep, I was taking up the slack to give her some breaks and can only have been 15 or so at the time myself) and it was just an absolute desperation measure.
    The consultant's explanation for it (the same guy who described it as "the worst case of childhood eczerma he'd ever seen in his entire career" - nice to do that in FRONT of the kid in question mister!) was that sometimes it's just the immune system going absolutely ballistic turning on itself... it worked for my brother in that it gave his skin actually time to repair itself (he was head to toe in bandages a lot of the time by now) and he even, for the first itme in years got eyebrows (he'd previously scratched them all out). He's since grown out of the worst of his - still has what people would describe as "bad" eczema but compared to what it used to be (people would stop us in the street to ask what was wrong with him - think they thought he had leprosy or something daft) it looks 100 times better... mind you we've got it very strongly running through our family - my memories of my dad (before he vanished bonking his office junior) were him sat in front of the gas fire scratching at his arms until they bled most nights.
  7. Thanks everyone for your replies, the immunosuppresant treatment is a last resort. I am the worst case my consultant has ever dealt with, but I manage to work full time because I have to get on with this. I have done all the bandages, wrapping treatments, sunbeds, have alopecia as a result of my eczema but I won't let this get the better of me. Just need peoples input to keep me going. Many thanks to all those who have replied xxx
  8. Like I say - if it's any help with the hairloss - my brother had no eyebrows for years until he went on the treatment and they promptly reappeared! (He's now a burly 20 something with bad eczema but not insanely severe eczema... and a bad haircut)

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