Since my last posts I have been to see the allergist at the hospital which I'd been on waiting list for some time. Not much happened as they could do no patch testing as there were clearly no skin patches free. Some blood tests were taken which revealed the obvious for me, with showing up positive to things like dustmites, pollens, grasses, molds etc. I've been referred for a dietician app. as a follow up... meanwhile got into see the dermo at hospital who to my horror was going to be the same private dermo I'd been seeing for 18 mths with only progressively worse problems. Thank god there was one other available, not that it made a lot of difference. As there stance is much of a muchness - yes, you have a history of atopic eczema and associated allergies, this calls for cortisone. I explained that I was pretty sure the treatment had created a completely different problem and that the cortisone was the culprit here, not the eczema. He basically said well, all I can suggest is another immunosuppressant drug, as it is not economically feasible for the hospital to treat this any other way than with one of these 2 drugs.
I asked him if he had ever heard of Red Skin Syndrome or Topical Steroid Addiction and Withdrawal. He off-handedly said, oh yeah, I think I read an article in a text book when I was studying, then proceded to hand me some printout info for the immunosuppressant drug to go away and think about for my next app. Not likely to bother given I have just stopped taking Azathioprine(another immunosuppressant, that didn't do much except make me feel permanently more cruddy that usual. Anyways, the naturopath I've started seeing is keen on supporting gut function and supporting me in strengthening my body, and my gp is also supportive in trying to get me as healthy as possible and keeping a check on what's happening. She said she'd never seen anything like it, but was willing to look up the ITSAN site and have a squiz which was comforting, because the hospital just looked at me like I had four heads when I said I did not want cortisone.
Sleep has still not been on the agenda due to the never ending itching and nerve pain. So far I have been plodding through my days with things that seem to take forever to do - baths, greasing up, washing umpteen changes of greasy clothes and bedclothes in a day, keeping appointments and preparing meals,etc. But yesterday, after having no sleep for weeks, I finally fell asleep at 4am and woke at 1pm, which you would think would be grand, except when I woke up it was like my body had turned into a statue and any slight movement was excruciating. My bedclothes had dried onto to all of my weepy skin and I was in a world of pain. I lay there for an hour trying to muster the gumption to get myself up. It was hopeless though and I gave in and rang a wonderful friend who came and helped me out of bed, helped me undress to be able to have a bath and then helped me re dress, dished us up dinner and got a load of washing out for me. I was so lucky she could come. What a mess. Thank goodness today is a little better.
I am dearly hoping that there is some reprieve between flares and this one will be over soon.!!??
Well wishes to all you others out there and thank god there are some of you who can say you made to the other side and you have your life back again. You are my beacon of light. xx