)To my knowledge, there are several diagnostic criteria, mirrorring the "two camps". The criteria by Molderings et al, for instance, mention elevated tryptase as optional. The set of criteria you linked require elevated tryptase during a symptomatic episode, and the difficulties of that were discussed above.
I should really start a separate thread for this! Sorry if this is hijacking!
(I can't even get some of these tests in Australia, as far as I'm aware!
)... or even worse, having them re-trigger my allergic reactions to food and my other autoimmune disorders which are in remission. ... also it was a slow process for me to find my current doctors and I could write a book on the series of nightmare doctors that I saw in past years
(Although.. if they do have any suggestions of MDs they've heard of in their/a similar field, I'd be all ears!) But I haven't found anyone via the forums here, and I've gathered a couple of suggestions via Twitter... but I really do need to exhaust as many options as possible. haha! ah deary me. I'm fine, with just increased Vit D supplementation, thankfully.
HCQ actually was amazing for my MCAS when I first took it. For me it takes about 3 or so days before I clearly notice it's effect. But these days its useless for me as it needs time to build up in your system before it works and that wont work on me as my mast cells somehow make me resistant to drugs and prevent me from even metabolizing them.
Oh man, I can totally relate to your frustration. And it pissing me off a little just reading this. I would try pursuing treatment for MCAS and follow through with the Rheuma who originally diagnosed you with lupus and try to strategize in a detached manner how to go about convincing them to do what you want. Think of what they would need to see to justify providing treatment/
Interesting, I'm only hypotensive when my MCAS is being what I consider to be mild and I nap multiple times a day for easily 3+ hours if I dont use all my will power to get up and pop stimulants/nootropics --I guess that is also losing consciousness but I've never actually fainted. When its my MCAS is more moderate my POTS starts up and my BP starts to approach 120/80 with a crazy high heart rate. Then when severe, my diastolic jumps and stays at over 120 and systolic typically stays b/w 120 and 160 at this MCAS severity and heart rate even more jacked up.
Rituxan is definitely less toxic and, in my view less risky, than Azathioprine. If your rheuma disease are in remission right now then I would do what your other docs suggested. Focus on controlling your MCAS. Incessant MC activation aggravates every aspect of the body, so there is a strong possibility that it can worsen other conditions. And if your rheuma disease are in remission then why are seeking more treatment for it? Im a bit confused with what youre actually trying to do.
No problem. I'm glad if I could be useful. I like figuring out complex problems, I actually find it kinda fun. A bit like solving brain teasers and I like bragging about accomplishing things so-called "professionals," in any field, can't.
Based on all I've read I agree that tryptase is the gold standard of MCAS diagnosis. Out of every diagnostic test I've seen studies on for MCAS, tryptase definitely does seem like the best one, and I think this article is simply just reviewing that. Clicking and skimming (the whole study not just abstract) through their own listed sources (most of which I've already thoroughly combed through in the past) confirms the validity of trypase as the gold standard but they all note exceptions which the article doesnt even waste a breath on. Black and white, simplistic take. The article doesnt even touch piecemeal degranualation, mast cells dont just pop and always release all their junk. Mast cells are heterogeneous in phenotype and function. What comes out is dependent on a varying factors, a major one being microenvironemnt, essentially which of its receptors is gets stimulated.
When my dentist retired, the dentist who took over his practice refused to work with me b/c he was scared I was an anaphylaxis risk and basically "fired me" as a patient (I guess he was worried about being sued). I saw two more dentists who were unable/ unwilling to grasp MCAS (or why I needed to know the ingredients in the materials that they used to fill cavities-- all the materials from the composite to the etchant, primer & adhesive) and I could tell that they either thought I was being difficult or I had some kind of delusion (vs. that I'd had anaphylaxis to certain dyes).
I finally found a holistic dentist who was very open to working with MCAS patients and other obscure medical issues. Without getting too off-track, it was not the right timing for me to proceed but when I am ready, she is the most viable option. She is going to run a blood panel to see which products are safest for me and then I can give them to my MCAS specialist so I can test each one as a skin patch for 48 hours (before drilling them into my mouth and THEN finding out I am allergic and having to get them removed
I can tell by their reaction if I show them the emergency protocols packet from the Mastocytosis Society. I did this once with an ENT and she had never heard of MCAS but she reviewed the packet and it helped her make clinical decisions in my case and she even asked me if she could xerox it. If the potential doctor reads through my personal packet, my allergy list, etc, and discusses it with me in an open-minded way then I can tell that they take it seriously.
My dermatologist (who knew me for many years before I even got sick) is very smart and I was very lucky that she was knowledgeable about MCAS and autoimmunity. She 100% understood why I was doing IVIG and Rituximab (and understood the mechanisms for autoimmunity). She asked me questions like, "Which mast cell stabilizer are you taking?" and "What dose of IVIG are you doing?" and it was obvious to me that she understood. For an upcoming (potential) procedure she said she will talk to the surgeon re: which local anesthesias are safe for me.
Connective tissue disease - it is often very difficult to actually diagnose which CTD you have - especially at the beginning. So is it SLE or is it Systemic Sclerosis or Sjoegren's or a mixture - it is not that clear cut.
The 2 other MCAS allergists I saw both said the same thing to me when they saw that Im on Rituxan. [Edit: didnt finish thought. They said that to me but they were clearly wrong, at least in my case.]I think that's a fine general rule he has, Rituxan is typically used for B cell related issues such as autoimmunes. And not every MCAS has very high IgE levels like I once did.
The facial swelling I get doenst go past just being mild. I can sympathize with being ultra sensitive to an allergen that even the tiniest amount of it can lead to extreme reactions.
Thats really crazy tachycardia, I never recorded anything over 160 BPM, but I also purposefully avoid measuring it as it stresses me out. During my POT screening they got me as high as 158, it felt fast but not that fast compared to how nuts my autonomic dysfucntion could make my heart go.
Highest recorded was just below 900 kU/L and that was a 4 or so months before peak MCAS sensitivity so it was likely even higher. Last I checked I was at 311. Whats your IgE like?
A problem I was having was getting it drawn when I was not reacting to anything to get a base value. But despite being so reactive, my tryptase was never elevated in any significant way.
)I think I got lucky with convincing my docs to give me Rituxan. My main Allergist is a biochem nerd like me and gets into it with me, and like me, hes open to something if theres good data supporting it. That right there is pure luck that I found a doctor like that. Then on top of that, this Allergist and the original Hem-onc that prescribed me Rituxan are very religious. So I 100% agree with you. Most docs are stuck following FDA approved indications. FDA has a lot of problems, mainly corruption, and doing as they say like it's word from G-d is ridiculous to say the least. When I convinced my docs to give me Rituxan, I reviewed about a dozen studeis, 1 or 2 were MCAS related and the rest related to IgE disease.
If I got outright noticeable reactions like that I dont think I wouldve been able to graduate professional school.
Non-IgE mediated MCAS can be hard to track since its pathophophysio can be hard to pin down. For this, Rituxan may have some immunomodulating effects that improve this but it likely wont be the solution for this specific problem
My tryptase ranged from 3.4 to 4.7. I also had trouble finding the right time to test it after an acute reaction. I did it both 20 minutes after a bad reaction and 2 hours after the reaction (when the symptoms were easing up). I seem to just not have this mediator elevated. I still dont have a good baseline, since I've been having more good days I should probably check them now. But I no longer really care enough to.
Just got my Xolair today and I'm already noticing a good difference. I think for me the key is Rituxan every 2 months. The big tell for me will be when my IgE total is below 50 (last I checked it just over 300), and how my symptoms feel then.
For me, repeated exposure to anything will add that to my list of allergens. If it was done all at once, then it might be fine? Not sure. But this probably doesnt matter as my allergies are non-stop and one more thing on top of all that wont make much of a difference in how I feel. It all needs to be suppressed anyways.
For the longest time I always read elevated tryptase has more to do with mast cell population size like that found in mastocytosis and it only transiently goes slightly up during allergic reactions for some cases and when it does its hard to capture on a blood test.
). I am pretty sure that composite fillings are not an option for me b/c they are all "tooth colored" and contain yellow dyes. I think the porcelain fillings (which are dye-free) are my best option. )
Thank you for this info and I just wrote it down so I can Google it. I had not heard of the BDT test. Is it something that specifically relates to dental work (to figure out what you are reactive to like the Clifford Test)? I wasn't sure if I understood? (Sorry we are going off-track, Blake
You can do that and you will figure something out. I am sure!!! You are so strong and such a fighter and you will make the right decision. I do not know about the Clifford test, but you will do the right thing.
I am not sure about this Clifford Test either but am thinking I might call them this week to get more info. My gut feeling is that it cannot hurt and anything that can provide additional info re: which dental materials I have a better chance of tolerating can only work in my favor.