u/DaniDellaEtc

Well.

The ER that took my blood sample for my acute reaction tryptase value NEVER processed it. This means I'll have to get another one done next time I go into anaphylaxis 🙃 I'm so annoyed because I rarely go into the hospital after an epi, since I manage them on my own. I also get a lot of bruising from IV sites (which I automatically get when I go in).

They got a really good baseline tryptase sample when I practically had to stop eating. Mine is pretty low (2.1 ng/mL, in a normal range of 1-15 ish), so that was able to rule out other mast cell conditions. But my doc still needs to confirm that what I'm having is anaphylaxis to be sure it isn't some kind of neuroendocrine or adrenal issue instead, because I am having veryyyy frequent episodes. It's not super likely that it's something else but he needs to make sure I'm on the right treatment course. If the tryptase value has a significant increase (for me, anything over 4.52 ng/mL), it would confirm anaphylaxis.

I'm just tired honestly. I wish they hadn't lost the sample.

(I also found out that I'm unfortunately not a candidate for Xolair because it's not beneficial for people with MCAS and low IgE levels, which is me. But we need to do everything we can to decrease epi use, esp considering a previous cardiac condition of mine.)

I recently started treatment. After a few weeks of doing much better, I noticed my symptoms increasing again, and my MCAS responses becoming more and more unpredictable. I was exhausted and wondering how I could possibly explain to my allergist that I was doing better regardless of the increases anaphylaxis episodes.

I was able to link this increase in symptoms to a medication dosage change. The pills were white on my previous dose, but are now an orange-y color. I take many yellow-orange medications, but turns out, this is the only one with a specific type of dye that my other medications do not contain.

I managed to rearrange my pills, so I could still take my new dose, but using the last pill set. Based on how I've been doing since then, turns out it was probably that.

I was going through an absolute mediator circus, and the smallest tiniest detail turned out to be responsible.

Have y'all ever played detective over periods of increased symptoms? What's the most previously insignificant thing you realized was contributing to a flare?

I've seen this pop up a lot on this subreddit, and I'm wondering what people mean when they list inflammation as one of their symptoms. It seems pretty general and what I can piece together from outside sources doesn't seem to fit with how it's used here, so I think it's just better for me to ask.

What do people mean when they say "inflammation"? Is it specific to certain parts of the body, or is it kinda like a set of sensations? How did you conclude the source of a set of symptoms was inflammation?

Hi! I've had MCAS for a long time (undiagnosed throughout most of that period) and only recently became epipen dependant. I've needed 2-3 uses a week on average for the past 1.5 months. I am being treated and am responding well. My baseline is so much better and I'm able to have more variety with food, though activation triggers are extremely variable and unpredictable. There is no such thing as a "safe food", it's mostly "pending threat" foods. While treament makes me feel better, it is not decreasing these life-threatening episodes in frequency by far.

I have had anaphylaxis where I didn't need epi in the past, so I only administer it when I know there is life-threatening potential. My allergist has confirmed that I have the correct use of it and am good at assessing when I need it vs not.

For context, I have secondary MCAS which, on average, carries a higher risk of anaphylaxis than the idiopathic type. I don't think I'll ever be able to safely eat without epinephrine nearby again.

Questions for those of you who rely on epinephrine:

- How do you "recover" after an epi, especially if you need to just carry on functionning? I was advised to hydrate a ton and add sugar to my water when the effect wears off and I feel a crash.

- How do you deal with emergency services? I am in Canada, but I'm generally wondering how it's been for people with similar experiences anywhere when MCAS is soo misunderstood and professionals often make assumptions.

- How do you ensure safety? ie: do you eat alone? How do you assess how many you need in stock?

- Any other useful thing!

Thank you in advance :)

(I would prefer no advice from people who are not in a similar situation ie: if you don't rely on epinephrine.)