Mast Cell Activation Disorder Question (mcad)

[firewatcher]

This one goes out to Mack's Mom or anyone dxed with MCAD:

What is the treatment regimen? And should any of us "try" it and see what happens?

Should this trial be overseen by our doctors or do it first and then tell them?

Would a trial of Zyrtec and Zantac be sufficient to see? How long would it take to "see?"

How would/do these medications interact with your POTS regimen?

I am about to approach my allergist with this and see if he will take it on, he already is concerned about Mastocytosis, so he knows I am not a nut from nowhere.

Thanks!

[janiedelite]

This one goes out to Mack's Mom or anyone dxed with MCAD:

What is the treatment regimen? And should any of us "try" it and see what happens?

Should this trial be overseen by our doctors or do it first and then tell them?

Would a trial of Zyrtec and Zantac be sufficient to see? How long would it take to "see?"

I haven't been diagnosed with MCAD but I having distinct flushing episodes with increase in burning skin, burning mouth, worsening pooling, and rapid onset diarrhea. I have all of these symptoms constantly (except for the diarrhea, usually the opposite), but I get a distinct increase in symptoms under any form of emotional or physical stress. My mom has Carcinoid Syndrome, which is another disorder associated with histamine release, but all the women in her family have had various histamine-related skin problems too. So I first started by recognizing when I was having an "episode" and I would immediately take a benadryl. It took about 2 hours for it to work for me, but it usually decreased my skin and mouth burning, and even the horrible fatigue, by about half. I've been taking Protonix for reflux and thought I might switch to an H-2 blocker like zantac 150mg twice a day., and I added 10mg zyrtec with a prn benaryl. I DID CALL MY PCP FIRST. She said I should be fine.

I also had a routine appt with my rheumatologist who also touts himself as an allergist (I saw him originally because my docs thought the chronic frostbite I get was autoimmune-related). He said his patients with MCAD or mastocytosis get symptom relief on one zyrtec and an occasional benadryl! This doesn't jive with what I've heard about mast cell disorders, as I've read there are all type of other mast cell/immune inhibitors that are used for these diseases. My hubby and I decided that if I was diagnosed with a mast disease that we'd find another allergist.

I had a skin biopsy last winter when a dermatologist diagnosed my chronic frostbite (I wasn't out playing in the snow , I wasn't getting proper circulation to my feet for 4 1/2 months for an unknown reason. I still get these symptoms when I get the slightest bit chilled. It's not Raynauds. My guess is it's the dysautonomia) I called the dermy and asked him to check my biopsy for mast cells. Unfortunately it wasn't stained with the recommended stain, but it came back normal.

I have noticed a decrease in my constant feeling of burning skin (like a constant sunburn) and burning, metallic mouth since I've been on zyrtec and zantac. Just my two cents! And I still take benadryl when I notice an increase in my burning symptoms with noticeable relief. I do plan on being off all antihistamines when I'm at Mayo in a couple weeks.

[iheartcats]

I occassionaly get annoying flushing (hive like/burning). They come on at different times - when I'm warm, stressed, eating, etc. I wondered if it was food allergy - but it really doesn't matter what I am eating (sometimes if it's 'hot' it's worse)...and then they go away. Showering always gives me the red splotches.

I have bad allergies, anyway, and am on Allegra.

I wonder what's the worst that could happen if I asked my doctor to try me on Zantac? I used to take Nexium years ago for stomach issues...is it a fairly neutral drug to try that doesn't mess with other things?

I have my allergy skin test in about 2 weeks, and have to go off Allegra for that (boo!)...

But the flushing is bizarre. I've always wondered why it happens. And I'm fair so I look like a tomato.

[flop]

I've never been investigated or diagnosed with MCAD but I noticed myself a very strong link between my allergies and my POTS symptoms. When my allergies were bad my POTS was bad too. When I spent 6 months on Prednisolone (not something I'd advise) my allergies were totally controlled and my POTS was barely noticeable.

I had been on anti-histamines all year-round for several years already. After doing lots of reading about hayfever I got my GP to prescribe Ranitidine (Zantac) and Montelukast (Singulair) for me - these help my allergies and help my POTS.

I tried discussing this with my doctor this week (taking along info from recent threads and Dr Stewart's article) but he just brushed it off. I'm planning to discuss it with my cardiologist at my next appointment.

(basically - yes for me trialling H1 + H2 blockers + Singulair made a big difference).

Flop

[juliegee]

Hi Jennifer,

I agree with Flop. Why not give it a try? I take ranitidine/zantac 150mg every AM along with zyrtec 10mg and singulair 10mg. For years , I also took ranitidine 150mg and a benadryl 25mg every night. (I now take atarax 25mg insted of the benadryl) I originally began taking the ranitidine for relief from severe (hospitalizations) reflux. I noticed every time I switched meds, like to Nexium, aciphex, or tried to stop the ranitidine; I developed awful hives. Then, eventually, even with the ranitidine, I developed systemic hives, chest heaviness, tachycardia, etc; so my allergist threw in the other meds. BUT, we noticed that I got really sick (reflux, severe reynauds (hospitalizations for cyanotic digits); chest pain when taking a deep breath, worsened POTS/NCS, etc.) every time I tried to back off of the meds. After one hospitalization for a blue finger that wouldn't pink up, a vascular surgeon weaned me off of coumadin, then to plavix, then to a daily 81 mg aspirin and THAT/ (the aspirin) seemed to help all of my symptoms even more. I stumbled upon my MCAD regimen w/o a DX and became utterly dependent upon it and then tried to figure out WHY. I did my research and found a doc that was in the forefront of MCAD and made a visit to her, Dr. Marianna Castelles at Brigham and Women's. In large part, because of the relief I got form my med regimen, and based on my medical history, and other laboratory tests, she DXed me. That's my long MCAD journey made short.

The meds you propose taking are quite benign and all OTC. My goodness, why not try taking them and see if you find symtom relief? In reviewing my history, I noticed that I began taking each drug as I really needed it. For instance, when my reflux was so awful, I keeled over, I started the ranitidine. Then, when the allergy-like symptoms were so severe they progreesed to anaphylaxis, I started the zyrtec and singulair. Then, when my Reynauds led me to more hospitalizations for blue fingers; I started the aspirin regimen. Each body system malfunctioning was apparently unrelated to anything else going wrong....BUT so many systemsmalfunctions in one healthy appearing young (when things started:-) woman was puzzling. My own research led me to this site and then to researching MCAD. Allergists and ANS specialists from all over the world are coming together and realizing that this phenomenon is real, there is clinical and labortory evidence to document and DX it.

Because the treatment for MCAD is so readily available, has little to no side effects, AND the testing for masto (skin biopsy, bone marrow biopsy, etc.) is so invasive and expensive; many practioners ARE starting with a trial of H-1 and H-2 blockers. Many researchers theorize that a patient's response to treatment (exactly what you are proposing, Jennifer) is an important part of obtaining a DX. It'd be great if you had a physician knowledgeable enough to sanction and oversee your trial (like from Vandy.)

A few other clues for me were years of interstitial cystitis in my late 20's (bladder full of mast cells); a huge uterine fibroid in my early 40's (uterus full of mast cells), AND the fact that I dramatically worsened (with daily anaphylaxis/flushing episodes) with beta blockers- very typical with MCAD.

The MCAD DX is very controversial right now. All allergists now acknowledge mastocytosis as there is an agreed upon consensus for DX. BUT, there are many of us with very similiar symptoms floating around who do not met the mastocytosis criteria. We have the exact same symptoms and benefit from the same treatment. B & W and Vanderbilt are two of the institutions in the forefront of recognizing and DXing this MCAD phenomenon.

Thankful, your severe Reynauds is very much like mine. It makes me feel even more strongly that you are dealing with a mast cell disorder. It's like when we are reacting/ dealing with chronic low grade anaphylaxis; our extremetities are deprived of blood, as it is more needed for our more vital organs- brain/heart, etc.

Sorry to be so wordy. In short, YES, by all means, give a MCAD regimen a try and let us know if you feel better. The only caution I would give is to be careful with aspirin. Many with mast cell disorders tend to react (anaphylaxis) to aspirin. chances are, you know if you can tolerate it by now. I've never had a problem.

All the best-

Julie

[iheartcats]

Mack's Mom:

Thanks for all your information. That's very helpful for us wondering about this! It seems to be the hot-topic lately.

I have an appointment with my PCP later this week and will be discussing that 24-hour urine test (just as well give it a go) and will ask for a ranitidine prescription (I know it's OTC, but cheaper to go through insurance for me usually). Since I've taken it and Nexium at different times, I'm comfortable they won't cause any issues, and best case will help.

Now. I'm on Allegra 180 which has been pretty decent. Should I switch to Zyrtec? The one thing I was told with Zyrtec is to take it in the evening (I take Allegra in the AM) because Zyrtec can make you a bit drowsy. I'm sure I can switch my prescription, or buy Zyrtec OTC (but I have a huge backlog of Allegra because I get 90-day supplies). Is Zyrtec just a better choice for MCAD?

Also I did an experiment today. I always notice if I 'itch' my chest I turn bright red. So I ran my fingernail over my chest today and it turned bright red along that strip area I scratched and went away about 30 minutes later.

For people with MCAD - how do you know if something is going to bother you one day and not the next? What if peanuts are fine one day and hives the next? I seem to be on and off in what bothers me.

The one thing I'm bummed about is I can't take my allergy medicine at the end of next week because of my upcoming allergy test (need at least 72 hours off meds). I think I'll be rather Potsy so I have to stay very hydrated, etc. But I want to get a good read on the skin test and go from there.

Any clue what causes MCAD? I've always been rather allergic to things with sensitive skin, allergies, easy hives (can't even get pedicures, get hives so easily), eczema (I have Elidel cream for when it's horrid), etc.

Oh - and does anyone with MCAD take Mestinon? I'm starting that next week and wondered if it will react to anything.

Forgot to add: I was diagnosed with interstitial cystitis a few years back. It's better now but I went through a lot with it (antibiotics and more antibiotics and nothing helped). Finally saw a Urologist and the only thing he could guess was interstitial cystitis because everything else was fine. It's somewhat better now (flare-ups on occasion), but this makes me wonder. I just read at Mayo it could be allergy related an no one mentioned that during my tests/issues with it.

[juliegee]

Hey Cat Lady,

I think you'll get the same benefit from allegra as you would from zyrtec. By all means, keep on taking it. It is also an H-1 histamine. Let us know if you feel better when you combine it with ranitidine. (I buy it in large quantities at Wal-Mart as my insurance won't cover any OTC meds.) The red mark left over from the scratch is called dermatographism and is very common with MCAD. As far as knowing in advance what will bother you- that's the $64,000 question and the most troublesome aspect of mast cell disorders. I've had full blown anaphylaxis from pistachios and had no allergy show on a RAST blood test. What bothers me from day to day- definately changes. What causes MCAD? I don't have a clue. Mine has progressed over the years. I've noticed that many with MCAD (as opposed to true mastocytosis) tend to be over 40 and have had things slowly progress. My MCAD has a genetic aspect. My Mom, Grandma, and son all have had anaphylaxis and autonomic issues. Good luck (and be careful!) going off your meds. I hate that and won't do it any more. The interstitial cystitis is also indicative of a mast cell issue. I'm so glad you are looking into it!

Julie

[mkoven]

All very interesting. I've posted before that my first bad ans episodes looked like anaphylaxis. I was reacting to EVERYTHING, felt like I could eat nothing (except rice and chicken). I also have dermatographism. I ended up on prednisone for six weeks-- not a good experience, and did not help entirely. Saw a top allergist, who weaned me off with high dose antihistamines-- allegra 2x a day, zyrtec 2 x a day, pepcid 2x a day, singulair, and benadryl for breakthrough symptoms. It did eventually settle down. I also test negative for mastocytosis, and am truly allergic (positve rast) to numerous things, but not as many as I was reacting to. I would get intensely itchy, throat would tighten up, short of breath, and I would feel faint with chest tightness. The allergists I saw are not believers in mcad. and don't deal in ans issues. (The one allergist tried to convince me that feeling like I was going to faint/couldn't breathe was anxiety. grrr. ) so now i explain that I have both ans dysfunction and am very atopic--and each triggers the other.

[jjb]

I've posted before that my first bad ans episodes looked like anaphylaxis. I was reacting to EVERYTHING,

I am becoming more interested in this topic and cannot wait to learn more. W/ my IC work they found elevated mast cells (don't know if that means anything) but I have always been prone to quirky rashes, had anaphylaxis once, have raynaudys type symptoms and so on, however, I could never tolerate benedryl or any dopamine antagonists for more tan a day or two consecutively as they are a huge trigger for my ANS symptoms, abnormal movement issues, worsening of allergies & small seizures.

In terms of histamine issues, as anyone noticed improvement when eliminated certain foods from their diet?

It has been most helpful for me to eliminate processed & high GI foods.

[EarthMother]

I have an appointment with my PCP later this week and will be discussing that 24-hour urine test...

One of the Vandy specialists recommends a FOUR HOUR "enriched sample" taken just after a bad flare. (Void once after flare than collect for four hours.) I met with my Doctor last week and we are going to give this a try for the urine methyl histimine levels. I spent two days talking with the hospital labs (very friendly and helpful) to make sure they could run the non-standard four hour analysis. Eventually we got a yes.

So I've got my "jug" now I just wait to see when the next BAD flare happens. Its a strange thing ... to be looking FORWARD to a bad reaction! ;-)

[iheartcats]

One of the Vandy specialists recommends a FOUR HOUR "enriched sample" taken just after a bad flare. (Void once after flare than collect for four hours.) I met with my Doctor last week and we are going to give this a try for the urine methyl histimine levels. I spent two days talking with the hospital labs (very friendly and helpful) to make sure they could run the non-standard four hour analysis. Eventually we got a yes.

So I've got my "jug" now I just wait to see when the next BAD flare happens. Its a strange thing ... to be looking FORWARD to a bad reaction! ;-)

I wonder if mine could do these - we'll see...! It can be so hard to communicate with labs.

Wonder what exactly is enough of a flare-up for this? I get mild hives sometimes out of no where, I'm also hived out after a shower, hmm...Sometimes I can eat things just fine and other times same things hive me out, but they usually subside quickly. Usually. Not the Cashew incident!

Well, let's keep everyone informed. Looking forward in a way to my skin test to see what I am truly allergic too. Am tempted to ask for an in-office cashew eating test (the way things go it could've been a one-time reaction...but I was told to avoid all nuts in the meantime and to not have a Cashew Party...!).