Hi Brita,

I'm sorry that you're having such a difficult time!

A few ideas for you...

Did you take an aspirin this morning?  That could be the cause of this attack.  Aspirin is sometimes helpful for people with high prostaglandin levels... it binds to the prostaglandins and helps flush them out of the body.  But personally, I know that I will never try taking aspirin, especially after my recent experiment with turmeric.  Think carefully if you've had any of these symptoms: heavy periods, nosebleeds, easy bruising, or petechiae (they look like tiny blood blisters).  Look at your skin carefully... I always have a few petechiae, but sometimes they're very tiny.  I don't notice them unless I look closely.  

Degranulation can cause problems with bleeding due to the release of histamine, leukotrienes, and heparin.  I bet you've heard of heparin... it's a blood thinner used to treat people having a stroke or heart attack or to prevent clots.  Our mast cells contain natural heparin.  When you have a full-blown reaction and your mast cells release all of their contents, heparin is one of them.  See the problem?  Also, if your basophils degranulate at the same time (like mine do), the PAF will increase the vasodilation.  Unless you have plenty of clotting factors, this can be a big problem!  I've had TONS of hematological testing, but everything is "normal,"... I still bleed very easily.  I've never had an "allergic" reaction to aspirin, but aspirin is a blood thinner.  Great if you're having a heart attack; bad if you bleed at the drop of a hat.

Do you have at least one EpiPen for emergencies???  VERY important.  If your rescue medication (Benadryl or Claritin) is not working, USE AN EPIPEN AND GO TO THE ER.  I'm very serious.  Liquid Benadryl should start working within five minutes.  If you don't have an EpiPen, either get a Rx or go to the ER the next time this happens!  When they see you flushed with acute diarrhea and nausea... and you tell them about the tingly mouth/lips they should recognize what's going on.

The amount of medication you're on is NOT going to hurt your liver.  My medication regime is similar to yours, although I take 20mg of Claritin in the morning instead of Zyrtec... it might help to alternate different types of H1s.  I also take a higher dose of Singulair (30mg).  Antihistamines are generally very safe... it's much safer to take an extra dose than to go "down the crapper."  The recommended doses on the bottles you buy OTC are for people with heartburn or a runny nose... not for people like us.

Heather

My doc said that Claritin is the mildest of the less-sedating H1 antihistamines.  If you can tolerate Allegra/fexofenadine, it might help more than the Claritin or Zyrtec.  Or you could alternate fexo and Zyrtec.  I believe most people take 180 mg. (time-release) of fexofenadine twice/day.  I use the 60 mg. tabs twice/ day and then a Zyrtec at bedtime.  Also, some people find hydroxyzine (Atarax) is better for a flare, but it can be more sedating.  Liquid Benadryl probably works the fastest.  Zyrtec also comes in a liquid.

Are you strictly on the low histamine diet?  It could have been a food that knocked you down.

Regarding your liver, antihistamines have been tested and shown to be safe at much higher levels than what we usually have to take, and they don't harm the liver, except that a person can o.d. from too much Benadryl.  50 mg. at a time is a safe dose for an adult.

Hope you feel better soon!

Thank you guy so much...i'm so grateful as I feel like the nice branch  I'd been holding on to a few days ago suddenly turned into a mere thread.

I am definitely nervous about the aspirin for all the reasons starflower so eloquently articulated (and I knew far less about the potential risks and was already apprehensive) but I definitely did not take it until after the attack was in full-throttle (started this afternoon - the attack started yesterday).  I do bleed easily and I'm a big bruiser.....I wish I could just talk to Dr. Greenberger and ask more questions about why he wants me to try this, my concerns etc. Arrrrrgh!!!!

Dr. Greenberger seems VERY wedded to doing things in a specific order and since i have yet to meet him in person and feel a bit at his mercy since I so desperately need their input, I am going to give it a whirl for as long as I can, PROVIDED I don't get worse, in which case I will get right off.

I would like to try the Allegra (perhaps switching out one or two of the Zyrtecs) but, for now, since i don't want to piss off Dr. Greenberger and he seems entrenched in his way of doing things, I think I need to try to stick with his protocol until I head up to Boston and see him in-person with Dr. Castells. I am seeing them separately (two different appts in the same day and Dr. Castells is 1st) so it will be interesting to see if she has different thoughts on daily meds and rescue meds and whether she is more game to switch in Allegra etc. I am still trying to understand if the Brigham & Women folks tend to all follow the same regimen(s) or if they have real differences of opinion on medications / dosages etc. ? (I'd love if anyone has any thoughts on this).

I do have two eip pens and i"ve been keeping them at my fingertips, just hoping I don't need them. I have my liquid benadryl which I wish i could just gulp down by the bottle-full (i took 50 mg today with 20 mg claritin and a pepcid on top of my usual meds),  and if things are still going or staying South tomorrow, I may try Allegra (my husband has some 180 mg tablets).

I'm on a pretty rigid diet so i don't think it's anything from food (I almost wish it were because then i could avoid it...although there are so few foods left on my list it would be a bit depressing) - i can't think of what it was....right now i'm so reactive it could have been the kind of toilet paper I used!

One question - is the epi pen only to be used when one feels airway constriction or will it also help if i end up in one of my endless vomiting fits (with general mouth swelling, flushing etc.), even if i can still breathe? Sorry - I'm still so new to all of this!

THANK YOU! It feels like you all are life-rafts in this horribly choppy sea.....Brita

I am Pdl...my name is Deb... not Peter  I am a 32 yr old female.   I am on the aspirin and I have MCAD.  It has helped with syncope.  Hope I didn't come across rude, I am not trying to be.

I am seeing Dr Afrin at MUSC.  They diagnosed me from a stomach and intestinal biopsy with a positive CD117 and high 30s mast cell.  My tryptase was in the high teens I believe, just above normal, I think that is why he believes I have MCAD because I don't fit into the SM category for the WHO criteria.  He does CMP, CBC, and salicaytes testing every two to three weeks.

Thx so much for the responses. I am going to do a few tests in the coming days (ugh - hate the idea but i think it's the only way) to see if I can correlate the rise in most recent symptoms (twitching mouth, swollen lips and tongue etc. etc.) after ingestion of 1) aspirin 2) zyrtec 3) zantac 4) claritin redi-tabs as SOMETHING in one or more of those is definitely triggering more problems. UGGGH. I just wish there were a way to dump me in a petri dish and check reactions etc.

I feel like i am in a bit of a bind as I don't want to "piss off" Dr. Greenberger by "questioning him" re: Aspirin concept through an email to Dr. Castells before I've even met either of them.....but I also would really like her opinion on that AND on whether I can try Allegra instead of so much Zyrtec or other rescue drug options etc. As of now, I am thinking (and hope i don't regret this) that  I am going to just try to hang in there until Feb. 11th and do my own 'tests' per the above and, if i start to really see a correlation between a rise in rxns and one or more of the meds, i'm going to back-off one or more of the drugs and, if appropriate, swamp in something else.

Re: Zantac - quick question - does anyone know why most folks are on Zantac  (Ranitidine) vs. Pepcid (Famotidine)? (I am wondering if the red dye in the Zantac is part of the problem but I'm scared to switch since it seems to be the drug most folks use.....I'm going to post this as a separate topic just in case folks don't see it who aren't reading this thread as I'd really love any feedback. THANK YOU!!!

Hi Brita,

I can only speak from my own experience at this point.  I have had systemic mastocytosis for the past seven years, and recently found out that I had elevated prostaglandins.  I talked to Dr. Butterfield at Mayo, and they put me on low dose aspirin therapy.  I was taking Gastrcrom, but was having side effects from it.  I am just taking one baby aspirin in the morning (81 mg) along with 1/2 generic Claritin This Loratidine is from Sam's Club, and you get a whole year's supply for $15, by the far the best med I can tolerate so far!)  I tried the Clarinex, the Claritin, various drug store brands, and for me, this stuff from Sam's Club works the best, plus it is cheap!

In the evening, I take just one Gastrcrom and 1/2 tsp of kid dose grape zyrtec (generic from CVS).  Yes, your blood is a little thinner from the asprin, however, I also have a family history of cardiovascular disease, so in my case, it's probably more helpful.  I am in the early stages of it.  For the first week or so I felt a little weird, but now I feel better than when I was just taking Gastrcrom alone.  I was going to the bathroom all the time, tons of muscle aches, etc, but now am starting to do better.

I would find out if you have elevated prostaglandins first.  In my case, I have one of the weirder types of systemic masto, with elvated prostaglandins, tryptase running about 20, but all other mediators are normal.  I am also cKit mutation negative.  I had a positive bone marrow biopsy.  I've seen both Dr. Akin and Dr. Butterfield.

My advice to you is to get more information on what type you have and then that will probably dictate the types of treatment regimine you should go on.  Realize too, that no two patients are the same with this disease as it is a systemic condition and everyone will vary, based on their own physiology.  You have to sort of find your "magic mix" of meds, which is somewhat unlike other diseases.  That is accomplished through careful medical supervison and some trial and error.

Let me know how you make out.  I would be intereted to find out what you learn from Dr. Castills about the aspirin.

Take care!  Best of luck to you!

Jill