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Question regarding hives (Read 7050 times)
larken
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Question regarding hives
07/08/11 at 01:40:01
 
I need some advice, please.  For background, since July 2009 I have had raised red, itchy wheals on my arms, legs and back.  When I was not on medication, they were an inch or two in diameter and bright red on the edges, with white-ish centers.  They are always there.  Some of the earliest ones faded after about a year, but others have stayed put for well over a year.  I have also had persistent angioedema.  

Now that I've been on Ketotifen for a year, my skin and angioedema are much better, but still flare up when I don't avoid my triggers (salicylates, hot showers, exercise, etc).  

A masto specialist and the dermatologist that he works with diagnosed me with chronic urticaria + angioedema and related mast cell activation.  They were quite sure in their diagnosis.  They sent me on my way back to my general practitioner, saying that they had ruled out masto, diagnosed me and now I could be treated by my GP.

The catch is that I just saw another allergist (largely because my GP didn't feel qualified to treat me for mast cell activation) who specialized in skin disorders and he insists that the (now largely faded) spots are NOT urticaria hives but really eczema.  His reasoning is that by definition, hives do not stay in the same place.  They appear on the body for up to 24 hours and then vanish.  They may pop up elsewhere later on, but do not stay in the same place for months.   He thinks I have eczema and wants to start a whole new treatment course, as well as test me through an in-hospital challenge with aspirin (pure salicylates) to "prove" whether I am sensitive to salicylates.  

I know he does not fully understand mast cell activation (e.g., he refused to believe that my brain fog and irritability had anything to do with my skin symptoms or exercise-induced anaphylaxis, saying that I should see a psychiatrist about them; urgh!), but does he have a point about the hives?  Can hives stay around for many months?  

Should I just go ahead and find another doctor?........

Thanks,
Larken
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Starflower
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Re: Question regarding hives
Reply #1 - 07/08/11 at 04:01:11
 
Any allergist who thinks exercise-induced anaphylaxis is a psychiatric disorder is clearly NOT A VERY GOOD DOCTOR.

Urticarial vasculitis looks (and feels) like hives, but the lesions stay in the same place for more than 24 hours... that's how you know it's UV and not regular urticaria.  UV is diagnosed with a skin biopsy and tests for complement levels.  The treatment is plaquenil, which some people also find useful for MCAD.  

How much of a problem is your skin currently?  Is the possibility of a new treatment worth going through a dangerous test... one that even this doctor admits you would need to be hospitalized for? Shocked

Heather
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mikev
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Re: Question regarding hives
Reply #2 - 07/08/11 at 05:03:45
 
Larken:
Dump him as fast as possible, this doc has no clue. I've had internal skin issue all over for more than 5 years & when I get an outbreak it usually is on my arms only and in same general area & can last a month or longer. I actually have a small spot on my forehead that has been with me for 5 years and is an indicator as to what my mast cells are doing. Any doctor who wants to send you to a psych doc in my book is a moron. Just because you don't show on a test with a masto disease means nothing. An to top it off with an aspirin regiment is even worse as a lot us are nasids intolerant & only make the conditon worst & in my case actually increase pain.
MikeV
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Sandi
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Re: Question regarding hives
Reply #3 - 07/09/11 at 13:15:54
 
Amen to the dump him suggestion! You know your body. It's one thing when just beginning to have a problem but I really really hate docs that dismiss something we have discovered after massive symptomology and done something and it helped tremendously and they poo poo it! When I told my gastro that allegra totally alleviated my diarrhea ( along with my radical elimination diet). He said, impossible thats for sinuses.......... I'd been on a severe elimination diet for over 5 years and still had diahrreah, now it was worse if I re introduced the problem foods, but geeze after doing everything I was doing for so long and still going 15-20 times a day and suddenly I start allegra and it helped!!!........ You know whats been working stick with it and find a new doc. You are a specialist with you and whatever disease combo you have, you seek out the best specialist you have, but even with the top docs you have to do a lot of self analyzing with meds/diet etc.  Wish I could help you with the skin info it's not my specialty, but plenty on here will pipe in!!
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Patricia
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Re: Question regarding hives
Reply #4 - 07/10/11 at 04:01:28
 
Rashes are really difficult and there are different types...we use clobetasol on my husband that's  the one that works the best but I believe it's one of the strongest steroid creams you can buy. We use it sparingly because I'm afraid that my husbands skin will get too thin.

My youngest daughter told me a couple yrs ago that she had hives that live under her skin in the folds of her arms and behind her knees. I didnt think anything of it until all this happened. It's more like eczema and kind of red and raised but when she gets stressed or hot she will get hives in this area. The other day when she started a new algebra class she said she was so nervous that she could see the hives popping out and getting worse throughout the class. Hives usually look like they have water underneath, I gave her an H1/h2 and put some clobetasol on it and it went away.

My oldest daughter gets hives from heat, stress, emotional things and they are both doing a physical hives study at NIH later this summer. I think they are trying to figure out the mechanism that causes physical hives.

My husband who is suffering the most from MCAD does NOT get hives but he gets rashes on his face and pubic hair region called folicular dermatitis, washing with hibiclens antibacterial soap has helped to kill any germs, he uses an electric razor that we clean with alcohol and applies a little clobetasol. He also gets little bumpy pimple like rashes from the heat or sun...they almost look like mosquito bites but they're not. If we apply cream immediately to any of his rashes it usually takes care of things. In the past he would just let it go and his rashes would get awful...we have learned to attack these rashes, bumps, hives whatever pops up ASAP and so it doesn't manifest into something awful.

Hope this is helpful. Patricia
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Patricia
 
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larken
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Re: Question regarding hives
Reply #5 - 07/15/11 at 11:59:21
 
Hi All,

Thanks so much for the words of wisdom.  I know I need to dump this doctor, but it's hard because it takes sooo long to get in to see anyone at all these days and I've been holding out for a while to find a good one.  In any case, it was helpful to have you confirm what I was thinking!  I need to be better at trusting my instincts.  In the end, I'm not sure it matters what they call my rash.  The treatments are probably the same, since I am sure it is all mast cell related.
Larken
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missybean
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Re: Question regarding hives
Reply #6 - 07/18/11 at 17:12:38
 
Larken, hey girl! You just sound like my twin. I had doctors tell me my spots where hives, heat induced hives, ezcema, rosecea and dermatis herpetiformis.....you name in. I always thought they were hives but they stay in the same area for years, some days they are really red and pronounced and other days just kind of splotchy. But they never really go away just become less noticable. Usually I will have these spots that stay flared for around 6 months and then they fade. But they are always there and if I get exposed to something they flare up again in the same spot. These spots are telangiectasia's but they look like hives. I had one of these spots biopsied. Thats how I got the TMEP diagnoses. Will they biopsy it if you ask them? Most of my spots look like hives, but I do have ones that look like freckles, blood blisters, and splotches of hyperpigmentation. I asked my derm about why they are different and she said they can look like all of those. I hope you find a good doctor. Best of luck.
Melissa
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larken
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Re: Question regarding hives
Reply #7 - 07/19/11 at 18:01:15
 
Hi Melissa!  I'm so glad you replied.  You're right, that is EXACTLY what my current "hives" are like! I have a full range - some look like moles, others like chronic urticaria, and still others like urticaria pigementosa (but a masto doc told me they weren't because my tryptase is only around 5).  They flare and fade over time, but always in the same place.  

And, three years ago a doctor told me that I had DH.  It was true at the time that it at least looked like DH, but I never had a biopsy.  I just made the decision to cut out gluten (something that I already knew bothered me).  That rash lasted for about 5 months in the same place and then faded.  

You suggested TMEP to me before, but I looked online at photos and the classic spots look different to mine so I didn't suggest it to the doctor.  I should have!  I am going to call my doctor and see if I can get a biopsy.  I will let you know how it goes.  

So, your rash is itchy? Do you have the systemic involvement (sorry, I don't remember if you told me earlier)?  What is/was your tryptase, and what meds help you the most?  I'm trying to gather info to make the case to this (or some) doctor to do a biopsy and I'm expecting an uphill battle.  Ah, the fun of it all!

Thanks again.  This has been so helpful.  For one, makes me feel not so crazy (important these days - ha) and second,  possibly puts me on the road to some real answers.  Yay!  

Larken
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missybean
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Re: Question regarding hives
Reply #8 - 07/20/11 at 16:28:12
 
Usually the TMEP rash does not itch unless I get hot and start flushing. Right now I have hives....I think and they itch like H! My spots do not look textbook either. TMEP general does not produce dariers sign either, the spots I have that look more like freckles do not urticate when rubbed but the spots that look like hives/telangiectasia(splotchy red spots) they urticate when rubbed. I used to have dermographism, but not since starting all these antihistamines. I take zrytec, zantac, cromolyn sodium, prilosec,fibro meds, thyroid meds, and hydroxyzine.
I'm a leaker, and I do have systemic symptoms. My tryptase was 3.4. The meds that seem to help the most for me is the 300mg of zantac twice daily really helps with the flushing which of course makes me itch if I start flushing. Currently I'm having poor symptom relief and I have an appointment next week to find out whats going on and maybe which up the meds a little. Today was much better, maybe it took a few days for the prednisone to kick in. Who knows with masto right? Stay strong on the biopsy thing, you deserve an answer
Melissa
Melissa
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