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

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I have both an allergist/immunologist and a dermatologist that I see for this disease.

Already done both, I use just unscented dye free tide. I find perfumes and scents are a trigger. Clothing, I try and stay away from anything restrictive(pressure causes hives too) and itchy.

I haven't tried corticosteriod creams yet, problem is is that my itching or skin issues aren't really localized, they are head to toe, even in my eyes, ears up my nose, everywhere.

Does your hives ever come back if you encounter those triggers again? When your hives left was it gradual or did it just stop one day? Apparently most hives go away on their own within 3-5 years but since I have had dermographism for 10-15 years I am not really counting on it to just back up it's bags and go home on its own.

It isn't a cure as the illness will likely still be there underneath the med, at least it will be in remission. Ligelizumab, the med that I am hoping for, so far has had a very high success rate in clinical trials so far. It replaces another monoclonal antibody biologic called Xolair which itself was effective in 90% of patients(90% is usually unheard of when it comes to medications) and Ligelizumab is 6-9 times stronger than Xolair with a 6 week half-life rather than a 4 week half-life. Xolair helped me to a degree but I couldn't get the dose I needed covered, only got 300mg a month when I really needed 600mg a month.

Thanks for the support everyone

That's how my vasculitis started. I woke up one day like this:



That's from google ^ but I was almost identical. Sorry to be graphic. It started just from my knees down but eventually went up to my hips. I saw all of those doctors I listed with no relief. Sometimes it would go away almost overnight for several months, but it would come back suddenly.

I'm just looking at my medical records. The last medication I used was "Colchicine 0.6 mg" prescribed by a French immunologist in 2011. The marks went away and didn't return. It could be coincidence or maybe the medication worked?
I don't know.

I don't wish skin conditions on anyone.

(Also, consider "lanolin allergy" -- I get covered head to toe with hives if I touch it or paraffin. I'm allergic to wool and lanolin is a wool derivative).

Oh, yes. It takes about 2 or 3 days of exposure, though. Less time if I'm exposed to more than one.Gradual. When I moved out of my parents' house, most of it went away from my exposed skin in a couple of months (tobacco & dust). When I moved into a place with electric base-board heating, most of it went away from my unexposed skin (dust & molds). When I switched to an ordinary eco-friendly laundry soap, it faded from the creases in my joints (alkalies, perfumes & dyes). After switching to the glycerin soap and transparent deodorants, my "sweaty parts" stopped breaking out (alkalies, perfumes & dyes). Now I have problems only during exceptionally dry and/or dusty weather. At least I no longer look like I have a constant case of the measles.Something else that seemed to help -- two somethings, actually -- were sunlight and ocean water. If I got a sunburn, the urticaria faded (but was still there). This led my parents to start dosing me with Vitamin D and hydrocortisone. It seemed to work, but only during the summer months. Whenever I get an outbreak, I go down to the beach and soak in the water for about an hour. It has to be clean water, though. After a storm, all kinds of crap flows down the storm drains; and who knows what you may be swimming in?

So, for me, it's avoiding house dust, tobacco smoke and residue, perfumes, dyes, and strong alkali chemicals -- aluminum chlorohydrate being one of them (the active ingredient in most anti-antiperspirants).

I hope this helps.

OUCH! I coulda used a trigger warning on that one!

No worries, though.

The skin on that foot looks like the way the skin on my face did through most of grade school. Between looking like a leper and the stink from the medicine-creams I had to use, I was not a very popular child. Even the teachers ... aww ... fuggeddabouddit!

I am NOT a victim; I am a SURVIVOR!

Although if anyone starts singing that Gloria Gaynor song to me, I'll scream!

ya, surviving IS an ongoing task...

Gotta keep reminding myself, or I'll end up wallowing in self-pity.

Fnord and Noca,
Just so you know mine didn't hurt or itch, so in terms of trigger it didn't have a sensory component. It was bleeding under the skin. I can only imagine how awful it would be to have conditions like you guys have / had, with itch and discomfort involved. More power to you both.

Thanks, but I have mine under control, and I'm confident that Noca soon will too.

Hope I'm not adding to info overload. My hubby had something similar. It goes away when he cuts out BOTH coffee and dairy very strictly. It can be because of food sensitivities. But tracking down the right things to cut out is a big exercise. I'm not saying it's coffee and dairy for everyone. The sad truth is it could be something else. I've had a number of mysterious health things that had something small but specific that made a big difference. It's pretty much a combo of persistent and blind stupid luck to nail those little things down though. All the best.

Did ever get any resolution with your problem?