Hello everyone, I am new to this forum.  I have been referred to Dr. Castells at Brigham and Women's Hospital (I was given a choice in Boston, so I went with Dr. Castells but I've heard good things about both her and Dr. Atkin I believe his name is?)  I am sitting here with terrible breathing issues.  I haven't been able to breathe right for about a year now.  Had issues back in 2010 also here and there along with other symptoms that I have now like ithing, flushing, feeling like my throat is swelling, heart palpitations, abdominal pain, frequent headaches, etc.  Sometimes it seems that my symptoms will quiet down a bit, but then either stress, lack of sleep or something makes them come back.  

My worst symptom is BREATHING.  It is constant, although is goes from breathing a little better, to not breathing well, to harder breathing, to terrible breathing.  Does anyone know why this is happening or have any suggestions on how to make this better?  For a while, I was taking omeprazole, and this seemed to help me out somewhat with breathing, I don't know why, but I ended up having extreme pain in my spine, ribcage area, my back especially near kidney area and my sides, and when I stopped taking the omeprezole, it seemed to all go away slowly.
I also have scoliosis, but it has never caused any problems like this before, so I am 98% sure it was the omeprazole.

I don't handle medication well, so I am the first to admit that I really don't like taking them unless I absolutely have to.  My doctor told me to start taking 10 mg of zyrtec a day and a baby asprin.  I haven't started the baby aspririn yet...I put that on hold for now, although, today I just started the zyrtec (5 mg for now because sometimes is seems 10 is too much for me)  My trptase test was normal, but my prostaglandin test was high (I'll have to find the exact name of that test).  She said the aspirin should decrease the prosaglandin amount and then she would retest me in a month.  I don't know what to do.  This is the doctor that I am seeing right now who, bless her soul, is the first doctor to listen to me and make any sense out of all my symptoms and not look at me like I have 6 heads.    She said she wanted me to go to Brigham and Womens and get my tests done there because she said she didn't want to do them at her hospital and then have Boston REDO them, especially if I have to have a bone marrow biopsy, which she believes I need to have done.  So, I have been waiting for my appointment which was made in March, and I can't get in until late July.  

Does anyone know if Aspirin will help with symptoms?  I guess when your body seems to be allergic to everything and you seem to be one of those people that gets every side effect of every medication, you really don't want to take anything, and I am afraid of REYE's Syndrome from Aspirin, as I have read that not just children get this disease.  Has anyone taken the aspirin therapy before?

If anyone has any ideas on breathing issues....I would be so grateful!  

Does anyone know anything about Prognosis?  Do people live a normal life span with this?   It's hard waiting....but I hear Dr. Castells is worth it, although I wonder if I should ask if Dr. Atkin if he can get me in sooner with him?  Not sure what to do.  This is all so scary and I could use your advice.  Thank you so much.

Google doesn't offer much reading for Mast Cell issues with any hope.  There have to be articles with a little hope in it.....somewhere....It's nice to have this site to come to.  My children need me and I have to fight this fight for them.  Thank you so much.

Hi!  Thank you for responding.  Your breathing issues sound so much like mine.  I don't have congestion either.  I can't get a good breath in and I can't get a good breath out.  It's like shallow breathing, and I feel like sometimes I get stuck after I let a breath out and I don't realize it, and I have to remind myself to take in a breath.  Sometimes it gets labored, and I don't even want to talk because I get out of breath.  I'm not sure of any pattern yet..sometimes it gets a Little better and then I have times where it is bad.  I'm really hoping that Dr. Castells will have some ideas on how to help with my breathing.  I don't do well with inhalers, so I don't what she'll suggest.  Did you have to try the aspirin therapy?  I too, hesitate with medicine.  I've had some really bad luck in the past with horrible side effects, so I tend to ask a lot more questions than doctors probably care to answer that's for sure.  Are your breathing problems constant, or do they come and go?  Mine are constant, and it's really become my biggest battle...Thanks so much for responding!!

EXCELLENT POST, LISA!!!!  I can't emphasize enough how correct Lisa is in everything that she has written. She is 100% correct.

Lisa, let's repost your reply somehow as a sticky at the top of a category, because people need to know that masto does not affect their longevity and that they don't need to be scared out of their wits by this diagnosis.

VTMom -

Aspirin is something that has been shown to reduce prostaglandins, so it is recommended, HOWEVER, mast cell patients often find that aspirin is a trigger for them, so I would be careful with it, starting at a very low dose and tapering up very slowly.  I tried it and was fine with a lower dosage of first one baby aspirin, and then two, but when I got it up to 5 my already annoying breathing problems got worse.  

Previously I just got out of breath really easily and sometimes felt that I couldn't get a full breath.  It seems that the aspirin exacerbated this and now, even though I've been off of the aspirin for weeks, I'm still having difficulties.  Where I used to have issues with fragrances and strong odors, finding them irritating and causing nausea, I now find my airways starting to close up around them.  I can often hear a wheeze in my throat.

I went to my GP and she did a breathing test to make sure my lungs were still okay, agreed she could hear the wheeze in my throat, and prescribed a steroid inhaler (Alvesco).  I've since had to increase the dosage on the inhaler, but I'm finally starting to be able to breath better.  In fact, I think I'm breathing better than I did before I tried the aspirin.

Treating mast cell disease is very much an exercise in trial and error because each person reacts differently to each possible trigger and each medication.  You do have to try things.  If they make you worse, stop and move on to the next one (there are lots to try).  It sounds like you haven't really tried much in the way of H1 or H2 antihistamines, and those are the first things to try to get all of your general reactivity down, along with dietary changes (avoiding triggers - for many people this involves a low histamine diet).  I used to be unable to take a hot shower or go out in heat because I would itch so badly I wanted to rip my skin off.  It wasn't until I got up to three Allegra and six Zantac a day that I found enough relief to be able to take a hot shower!   I would recommend trying Allegra rather than Zyrtek (which makes me groggy), as from what I've read, it seems that people on here have better results with fewer side effects with Allegra. (You can buy it cheaper at Sam's or Costco, as it is expensive.  Be careful trying generics, as may of us react to FDC dyes, and the name brand uses iron oxides for coloring instead.)

I'm still working on getting my GI issues under control, and I was initially diagnosed a year and a half ago (I've been disabled for 8 years and had related health issues most of my life).  I'm not saying this to discourage you, but to tell you that you will need to be patient.  There is hope (hey, I'm thrilled I can take a hot shower!), but expect some set backs too, since there is no set treatment that works for everyone.

You are lucky to get an appointment with Dr. Castells and I doubt any other specialist could get you in any sooner, so I would just work with your doctor to control your symptoms as best as possible until you see her.

I haven't noticed any GI issues with the inhaler, but then from what I read, Alvesco in particular is fairly inert other than in the lungs.  I would talk with your doctor about any med change, though, before just trying things.  

The breathing problems are mast cells once again going a little nuts.  Mast cells are basically part of your immune system and they are most prevalent in places where your body interacts with the outside world and needs to defend itself...the lungs being one such place, since you're constantly breathing who knows what into your body via your airways.  In the same way we react to foods and other things that we aren't actually allergic to, we can also have respiratory reactions to triggers that we don't have a true allergy to.  It's all just those overly sensitive mast cells at work.

Also, you might want to try being more assertive with your doctor, because often you will know more from reading things like this forum than the average doctor will have time to learn.  You can simply tell your doctor that you've been reading up on this (mention your sources) and that you're concerned because so many people are sensitive to aspirin.  Of course, Dr. Afrin was adamant that I try it, even knowing that it is often a problem for people, so I tried it.  The thing is, if you get really stressed over it, you might react simply BECAUSE you're stressed over it, so it needs to be your decision.