Trapt in sensory hell, cure 2-3 years away...

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I struggle with multiple chronic illnesses but the worst of them all by far is chronic urticaria(chronic hives). I feel like my body is engulfed in a swarm of fire ants and fleas constantly crawling all over my skin biting, stinging, itching, burning, it is pure sensory hell. I saw my dermatologist yesterday who told me that there is a medication in clinical trials which is as close to a cure as possible that will be on the market in 2 years, and then it may take 6 months to a year for it to get covered(its a biologic so unless you are a rock star, its impossible to afford out of pocket). Well I guess its good news because I thought it was going to be 4-5 years.

While 2-3 years doesn't sound like a long time to wait, when you are in hell, 2-3 years seems like an eternity. I have had this disease for 2.5 years so far and to repeat everything I have gone through already makes me want to break down and cry(and I do most nights). I live in constant fear of my medications ceasing to work, which most of them I have taken so far have. There isn't any treatment any doctor can tell me of that I am not already aware of. I wish I could just be put into a coma for 3 years and wake me up when its over.

(((((((((NOCA))))))))))

I wish I knew how to help!!

I am all too familiar, Noca, with whacky "cures" crawling out of the woodwork every time someone mentions a difficult condition. So don't hesitate to ignore my suggestion and I don't even expect acknowledgment.

My husband has suffered quite a lot with itchy skin. He read somewhere about aloe juice taken internally. I am absolutely convinced it has cured this problem. You buy it in the "natural foods" section of a grocery store.

I hope this may help a little and in any case, I'm very sorry you have so many struggles.

Like Bea, I don't want to sound like I'm reinventing the wheel. You can take or leave this because I'm sure you've been referred everywhere and tried everything.

I suffered from idiopathic skin vasculitis (petechiae, purpura) very suddenly, about eight years ago. It seems your condition could be related to vasculitis of some sort, as well. I ran the gamut of professionals so I'll list them in case there's a professional field you haven't tried.

Dermatology
Haematology
Endocrinology
Immunology and Allergists
Rheumatology (Lupus SLE, CLE, DLE, Scleroderma)
Neurology
Oncology (Leukaemia)
Hepatology (Liver)
Nephrology (Kidneys)
Gastroenterology
Infectious Diseases

Basically, you name it, I saw the specialist. I'm sure you've seen all or most of these?

I just want you to know I feel for you. Skin conditions are the absolute worst to deal with, and the numbers of differential diagnoses are astounding. The next time I see my dermatologist (probably in May), I'll ask her about your condition and the treatments that are available.

Hugs

i, sadly, have nothing useful to add, so just... best wishes of any relief u can get with this

Have you tried an allergist?

I had chronic urticaria all over my body (face, too) until I got away from smokers and central heating systems, stopped using after-shave lotions, and started using glycerin-based soaps and transparent deodorants. It took a few years, but my skin mostly cleared up by the time I was 30.

I'm willing to bet that Noca has tried all of these already.

Of easy and cheap things to try, I would also try changing laundry chemistry to something recommended for babies and check if different clothing materials make any difference.

If you expect this new trial medication to provide you with an outright cure, there's a good chance you're going to be disappointed. The idea that pharmaceutical companies can work those sorts of miracles is not a whole lot more than a myth.

I just turned my apt upside down trying to find -
DESONIDE cream
It did absolutely cure a condition that sounds similar to yours.
It's prescription.

Let us know how you go?