Hives??

[daisy]

Hello -

It's been a weird week for me and I wanted to see if any of you share any of these symptoms. Since my diagnosis of POTS, I like many of you, have become ultra sensitive to meds. It's not unusual for me to break out in hives or a rash if I take a new antibiotic, or heart med or if I get stressed or overheated. I will have random itching often as well.

But, last week I was sitting at the computer and just started itching like crazy. I then broke out in hives all over my body (from my ears to my calves). They lasted most of the night. Benadryl makes me hallucinate and because of other heart arrythmias I have I have to be careful with otc antihistimines. My Dr. called in Atarax which helped the hives but did knock me on my behind. Anyway, each day, I wake up with either no spots of just a few and get more and more as the day goes on. Sometimes, I will only get one (like the huge one in the middle of my forehead that made me look like a cyclops!) and other times I get a rash that is almost under the skin in several places. If I scratch or touch these areas even slightly they turn beet red and get much worse. I also have burning and stinging sensations all over my skin - like I have a sunburn but no redness is there.

I realized that I had stopped taking Protonix a few weeks ago. I have been on this drug for several years for severe GERD. While researching hives, I came across the excessive mast cell issue. I saw that Protonix and other proton pump inhibitors are often used to help counter excessive histimine produced in the stomach. I am now wondering if going off the Protonix has triggered these attacks...???? I went to my PCP today and he suggested I go back on the protonix to see if things improve. There is no other obvious cause for these random outbreaks - I have not changed any detergents, soaps, cosmetics, etc. and my stress levels are no higher than normal. I have not eaten anything weird or different that I know of. I know people can develop allergies to things that never bothered them before but it doesn't seem to be linked to what I am eating.

After researching the mast cell activation issue on this forum, it looks like there may be a connection to POTS. I read that many mast cells are in the stomach and that systemic mast cell problems can affect the stomach. Maybe the protonix was keeping all this under control without me even knowing it and going off of it after all these years made everything go haywire?

I would appreciate any insight anyone can give me and hearing of others experiences with mastocytosis....Thanks!

[iheartcats]

Well. I always had allergies and I have had things give me hives (rare, but a certain blush or something which the dermatologist said was likely the fragrance or oils in it).

But with POTS my hives have gone a bit insane. I can get hives eating the same thing one night as I had 3 nights before (I really don't think it's the food...just being either hot or just overactive system).

I get hives after every freaking shower but they go away quickly.

Same for heat, stress, etc. It's FRUSTRATING to say the least, but my allergist has a hunch these hives have to do with an underlying autoimmune issue. He's seen it before, almost impossible to figure out, and he's seen the issue go away in a year or two on patients as fast as it came. Sound familiar?

I'm taking Zyrtec and Zantac. I wonder if your stomach pill is similar to Zantac. I still get hives, but not nearly as bad. They are much more bearable now.

I had the blood test for Masto, don't have that (allergist said this one blood test, can't remember what it is right now, shows if you have true Masto). He wasn't familiar with MCAD but is reading papers I left on it.

I just know I'm super-sensitive now whatever it is and it seems to go along with the POTS. Having always been allergic to things doesn't help, but the hives are a pain.

Let us know if your going back on the medicine works!

[daisy]

Thanks for your reply cat lady! Were you prescribed Zantac specifically for your hives and skin problems?

[juliegee]

Hey Daisy-

That was one of the big clues that I had MCAD. I stopped ranitidine (zantac) for a trial of Nexium. I also developed big blisters/hives/cysts all over. Some itched and some hurt. I had huge things like boils under my armpits. Mine progressed to chest heaviness, trouble breathing, tachycardia and anaphylaxis before I figured things out.

I am totally going along with your theory and I empathize, BUT protonix is nor an H-2 blocker- is it? It is a class of drugs called PPI's (proton pump inhibitors.) I don't think they are linked to the reduction of histamine. I could be wrong. Please set me straight.

Regardless, Daisy, it makes sense to re-start the protonix again to see if the hives go away.

Hugs-

Julie

[daisy]

Hi Mack's Mom and thanks for replying,

May I ask how you found out for sure you had mastocytosis? What tests were done? I believe you are right that Protonix is a proton pump inhibitor. I'm a bit confused about the whole thing but I think it is used to treat stomach symptoms caused by too much histimine in the stomach not necessarily to prevent it but I also read somewhere that there is a connection between the amount of stomach acid and the amount of histimine so maybe since going off it I am producing more acid and therefore more histimine - I don't know, I'm guessing here and just trying to find answers. All I can do is try going back on it and see what happens. As I type, I am breaking out again, all over my chest and burning on my back. Of course, when I read about it, I also read about the malignant type and that freaks me out a bit!!

Anyway, I'm wondering how Drs. determine if you have it - bloodtests?

Thanks very much!

[iheartcats]

Thanks for your reply cat lady! Were you prescribed Zantac specifically for your hives and skin problems?

Daisy -

I was prescribed Zantac specifically for my hives/skin issues and it does help. Not 100%, but helps relieves the worst.

[juliegee]

Daisy,

I don't have mastocytosis. I have mast cell activation disorder. The symptoms and treatment are the same, but in mastocytosis, the patient has too many mast cells. In MCAD, the patient has a normal number of mast cells, they are simply over-reactive.

My DX was given by a masto specialist at Brigham and Womens, named Dr. Marianna Castells. My DX came about via a careful review of years of symptoms AND by the way I react to certain meds (H-1 and H-2 blockers) and how I react when I don't take them.

A simple blood test, serum tryptase is a good place for you to start with testing. It is always elevated in mastocytosis and sometimes elevated (after anaphylaxis) in MCAD. After anaphylaxis/extreme allergic reactions, your prostaglandin D-2 and methylhistamine (tested via urine collection) may also be elevated in MCAD.

Unfortunately, you need to find a really great allergist who is knowledgeable about mastocytosis/MCAD to try to unsort this. A masto specialist is an even better bet.

Do a search on this site of mastocytosis and MCAD to learn more.

All the best-

Julie

[daisy]

Thanks the info....I have been searching for more info about mcad but keep coming across mastocytosis. Does anyone know if there is a "gold standard" of symptoms that are used to diagnose the condition? I don't flush often but my skin is ridiculously over-reactive. For example, yesterday my sleeves got wet while washing dishes and within five minutes it looked like I had poison ivy from my wrist to my elbow! These outbreaks do not seem to be related to what I am eating, they just happen randomly or if I touch or itch my skin or if external stimuli come in contact with it. Many of the symptoms I have attributed to my POTS over the years (like random burning in my skin like I have a sunburn but don't) are also symptoms of mast cell issues it seems. I am trying to gather as much possible so I can talk to my Dr. about all of this......

Thanks!

[juliegee]

Thanks the info....I have been searching for more info about mcad but keep coming across mastocytosis. Does anyone know if there is a "gold standard" of symptoms that are used to diagnose the condition? I don't flush often but my skin is ridiculously over-reactive. For example, yesterday my sleeves got wet while washing dishes and within five minutes it looked like I had poison ivy from my wrist to my elbow! These outbreaks do not seem to be related to what I am eating, they just happen randomly or if I touch or itch my skin or if external stimuli come in contact with it. Many of the symptoms I have attributed to my POTS over the years (like random burning in my skin like I have a sunburn but don't) are also symptoms of mast cell issues it seems. I am trying to gather as much possible so I can talk to my Dr. about all of this......

Thanks!

Daisy-

Sounds like you could possibly have MCAD. Go to The Mastocytosis Society Website for the "gold standard" list of symptoms. It is is the midst of construction. Once you get to the new website. In the blue box on the left, 3rd paragraph down, click on "here" to access the old site. Once you are there, there is a lavender list of options on the left, click "Mastocytosis and Mast Cell Activation Disorder."

www.tmsforacure.org

Julie