Eclaires - can we talk about your hives?

[y4m]

I have a condition called cholinergic urticaria, which basically means I get hives when I get hot (showers, exercise, sweat, etc.).

Is that what you're experiencing? Took like a year of tests, quitting foods, steroid creams, etc. to finally get the diagnosis, and there's really not much of a cure--only treatment of the symptoms.

I take a prescription antihistamine called Atarax, which can help, but makes me pretty tired. But I've also found that forcing myself to have a reaction by running the shower head with hot water over all my hives gives me a 10-12 hour break (and skin that looks like a Jackson Pollock painting, done only in bright pink).

Allergy shots seem to have helped some too--if only by getting my general level of histamine down some.

Anyway, don't know if that's what's happening to you at all, but hives are awful and I hope you get relief soon.

[eclaires]

It's possible that is it. Cholinergic urticaria is on my list of potential issues from what I've read.

Initially we thought it was a sunscreen allergy, b/c I actually do have issues with sunscreen (PABA, specifically). About 12 years ago, I had a severe reaction to sunscreen w/ PABA (similar to my hives now and last summer), so I made sure to use sunscreen w/out PABA and I didn't have an issue again until last year. I used a PABA-free sunscreen and later that day I was covered in hives - even on my face where I didn't use the sunscreen b/c I use makeup or moisturizer w/ SPF. I assumed it was because of me touching my face w/ the sunscreen on my hands. I went to my primary doc and they gave me a shot and steroids, but the hives kept coming back all summer. I went and saw an allergist in late August, and they did some tests but I didn't react to anything. They wanted me to have my thyroid tested, along with some autoimmune tests to see if that was the issue. My thyroid numbers came back normal, but they are in the upper range of normal so it could potentially be a thyroid issue, I guess.

I just don't know. Like I thought it might be solar or cholinergic but I have been outside almost all the time since February (it's been warm here) and the first time I had a reaction or issue was last week. And then it seems like allergy meds can't touch it, but typically I don't take a daily allergy med so if I was taking one all the time, maybe it would help. But like right now, I'm taking clarinex daily (started the day after my reaction) and then hydroxyzine at night (started a few hours after my reaction) and it's doing nothing. It's not even preventing them from spreading or getting worse.

It's super frustrating regardless. I'm glad you've found some things that work! Did you get most of your help from your allergist? My allergist has been very helpful, but I'm thinking of seeing an endocrinologist to rule out the thyroid connection (it's apparently a pretty common connection? I don't know much about it).

[y4m]

That's so interesting about thyroid issues--I'd never heard that before. I did have blood tests for autoimmune disorders, and those came back negative. So maybe that rules it out.

The thing that is so frustrating about chronic hives is that they can come and go, even when you aren't doing anything different. My allergist has been most helpful. He says he often sees people who suddenly get chronic hives, have them for 3-5 years, and then they disappear again just as suddenly/randomly as they came.

The hot hot shower is the thing that helps me the most. It sucks during the actual shower because it stings pretty badly, but I'll take it in exchange for 10-12 hours hive-free.

[IIOY]

Jun 18, 2012 13:05:15 GMT -5 y4m said:

The thing that is so frustrating about chronic hives is that they can come and go, even when you aren't doing anything different. My allergist has been most helpful. He says he often sees people who suddenly get chronic hives, have them for 3-5 years, and then they disappear again just as suddenly/randomly as they came.

Butting in, but this is exactly what happened to me several years ago. My hives were localized - always on the backs of my thighs and always when I'd get the slightest bit warm - and after about three years, *poof* they were gone.

I don't think I ever made an allergy connection since I've had allergies my entire life and they've always presented in my sinuses. I saw a derm, who scraped and tested but got inconclusive results. I was going to go back for more extensive testing but suddenly the condition was gone.

[eclaires]

That is one thing that has changed - 3 years ago we moved to Knoxville, where allergy issues are some of the highest. I had seasonal allergies for the first time in my life the spring we moved here.

I just got back from the doctor. I got a shot and some steroids to hopefully get rid of it as it is now. I'm supposed to stay on a daily allergy med and they took some blood to test my thyroid again, along with some other stuff, including autoimmune issues.

I am supposed to be taking vitamin D daily, but I've been slacking. I've been working on my diet and exercise, too.

It's just really frustrating b/c a lot of what they suggest for keeping the hives at bay and getting rid of them is just not feasible. I cannot stay out of the sun/heat and not sweat this time of year. It's just ridiculous to even consider w/ the kids. Ugh.

[basilosaurus]

Peeking in to say SEE? I'M NOT CRAZY FOR BEING ALLERGIC TO EXERCISE!!!!

Sorry, had to get that out there. H thinks I'm insane, but he's witnessed it. It doesn't happen often, it seems to happen most if it's cool outside which obviously never happens where I live now. But, OMG, it drives me up a freaking wall. I started taking benedryl before hiking, but it didn't prevent it. Also, it has happened in hot tubs. It doesn't happen in general heat.

I've had it since I was a teen, and it happened about a year ago, so I'm afraid I'm not outgrowing it. My thyroid is perfectly fine, too. If anything, they'd assume I'm high (although I've been tested more than once and it's normal).

I've never really had any allergies, either. Although, in college, I went through a phase where my eyelids or lips would get hives and swell a few times a year. Skin testing only revealed a mild garlic allergy. It never happened after college, so I'm assuming it was something due to Nashville. Oh, and bees and I don't get along in the least.

[llama]

I am so sorry to hear that some of you have also experienced the annoyance of random hives! When I was a teenager I would get them from literally everything - when I was too hot, too cold, sweaty, touching grass or pets or anything that could scratch me, seemingly endless unexplained interactions with OTC and prescription meds I was taking. No evidence of allergies on a skin scratch and the allergist I went to was at a total loss about what was causing it. All I could do was treat the symptoms and even that didn't work very well.

After 3 years it went away just as suddenly as it had started. No change in any of my behaviors or environment that we could tell. Weird. But, I'm living proof that you can outgrow it, so maybe a ray of hope? :/

[SusanBAnthony]

DD had what sounds similar, last summer. Never did find anything after keeping food logs, seeing a derm, and an allergist. They went away in the fall, and haven't come back so far this year (although we moved to a different state so it could be she was sensitive to something in our house or yard, or some specific food product we were buying in MN? IDK). Anyway, a topical steroid helped her and once they got really bad and she had a dose of oral steroids, poor thing. We tried a couple different allergy meds too, which made no difference.

[y4m]

My skin test is out of control--I test allergic to wheat, eggs, soy, shellfish, tuna, nuts, vanilla, and like 30 other things. But I gave them ALL up for 2 months and still had the rash.

It's interesting how several of us had just moved when symptoms started. Mine started just after our CA move, though they are still going now that we've moved east. Stress maybe?

[basilosaurus]

Mine have happened everywhere I've lived except Hawaii. That's 4 states of varying weather and 2 countries in Asia. I think that means I have a medical reason to stay here forever Think the air force would buy that?

[eclaires]

My doctor did say that sometimes it can be triggered by something that you're not allergic to - or that it can just be a perfect storm of issues triggered by one new thing, but that it's all of the things combined (not necessarily an allergy) that give you the reaction. One other common thing I've noticed with mine is it involved us and a pool or splash park... so maybe some random pool chemical? The weird thing about that is that it didn't happen the first time we went to the pool, and I've spent every summer of my life in or at various pools.

Looks like the steroids are helping for the short term, at least. But they do put me in a terrible mood, lol. And my butt hurts from my shot!