Getting Started

In an emergency:

I recommend patients have this guide in hand when they visit an emergency room. This was originally compiled by mast cell specialists for The Mastocytosis Society when their educational materials were being edited by medical specialists.

Should you require the use of an epinephrine auto-injector, the standard recommendation is to:
1) Lie down or recline (and do NOT stand, even to use the restroom at an ER, until some time has passed since any “rebounds” of the reaction and your body has stabilized; this change of posture frequently re-triggers anaphylaxis and accompanying cardiac emergencies, but this basic recommendation is still not observed in some emergency departments. Demand the bedpan.).
2) Call for help (in case you lose consciousness or need assistance).
3) Follow the directions of your particular auto-injector.
4) Once the needle has deployed, make sure to continue to hold the injector against the thigh for longer than you think you need to.
4) Wait five minutes.
5) If symptoms are not improving, use a second dose.
6) Unless you’ve made alternative arrangements with your medical team, a trip to the ER is necessary for monitoring, both for likely “rebound” reactions and for other potential complications. You shouldn’t drive, and you may need to call an ambulance (remember the not standing up rule).

For the purposes of patients beginning this journey, DO try to:

1) Work towards establishing baseline treatment.

2) Carry rescue medications and know when and how to use them.

3) Begin attempting to identify your triggers.

4) Follow the "low, slow, and one thing at a time" rules.

5) Find a cooperative provider to begin appropriate, non-invasive testing to rule out other conditions which may be responsible for your symptoms and to gather other important information. (See this page.)

6) Seek support, both from your current medical team and any others you need to add, including mental healthcare providers, individuals in your support circle, or fellow patients in support groups. (I recommend reading the support group page first.)

For the purposes of patients beginning this journey, AVOID:

1) Any “go big” or “a lot of things at once” approaches to any non-emergency condition you need to treat, whether related to your MCAD or not. “Low and slow” is the rule for a reason.

2) Jumping the gun on non-emergency or unnecessary procedures or not taking adequate precautions for any currently necessary surgical, dental, or testing (like radiology) procedures.

3) "Fasting” beyond (for some patients, certainly not all or most) not eating before bedtime or just after waking, and any kind of "diet" that is not avoiding your individual triggers and the most common culprits.

4) Alcohol.

5) The very understandable attraction towards trends and miracle “cures,” including “root cause” fixes and trust in the medical advice of people who have been cured of what they believe is a mast cell disorder, or who have cured what they say are mast cell patients, with anything that is not mast cell disorder treatment. (See the page on support groups.)

6) “Root cause” obsessions (Beyond removing your triggers or removing yourself from a triggering environment, knowing with certainty any particular group of or individual “big trigger” for your case will almost certainly not make any difference at all in what you need to do right now.) If you still find yourself ruminating on just wanting to find an “off” switch after some period of adjustment to your diagnosis, see this question in Treatment FAQ's and seek appropriate mental health support.

7) Infusions of any kind. (In some cases, after other avenues have been exhausted, very specific infusions of individual vitamins, sourced with care and tested and administered with adequate precautions are important.)

8) Beta-andrenergic antagonists (propranolol and company)

9) Almost anything, herbal, IV, or otherwise, which you might describe as a “cocktail.

10) Colonics

11) Looking up academic research or doing keyword searches as you are trying to educate yourself. While there is a fair amount now of legitimate research on mast cell disorders, our understanding is rapidly evolving, these papers are often not interpreted correctly by patients OR by doctors who do not have a very specific background, and perhaps 99% of papers with “mast cell” as a search term relate to the many other important roles of mast cells in the body and not to the very specific kind of dysfunction which characterizes MCAS. Many of the remaining 1% are outdated or not relevant to what they are assumed to pertain to. As a patient, you will have to find your own answers and do your own “research,” so to speak, in trying any number of (well-known) treatments, tracking your triggers, and so on, and pouring over papers you would not know have already been scrapped or are related to something entirely different will only waste your and your providers' time. For the purpose of illustration, just a few simple examples of how this can go wrong:

1) A paper on an orally-administered local stabilizer and asthma which finds that the oral local stabilizer is wholly ineffective as an asthma treatment, as you would expect if you know anything about local stabilizers you'd take orally, not that it's used successfully for this, as it is often interpreted. I can't tell you how many times this excellent paper has been brought to my attention by someone wanting to use this stabilizer directly as an asthma treatment, orally, or wondering why it has not addressed their or their patient's asthma symptoms. (...or, unrelatedly, how many times “asthma” is used in place of various respiratory symptoms that are in fact not asthma. It's easy to see how search terms can go wrong here.)

2) A paper on a natural mast cell “stabilizer” that assists in a process that ultimately improves wound healing...but likely not inappropriate degranulation, and which also happens to be an extraordinarily common trigger among mast cell disorder patients. If you are not very familiar with all of the relevant pathways involved in a given process involving mast cells (and if you are, you're the first, so please publish your findings immediately), it's important to take things you find through these keyword searches and in compiled “stabilizer” lists with a grain of salt.

3) Almost all medication inserts and side effects “deeper dives:" Beyond the usual problems mast cell disorder patients face with a number of drugs and inactive ingredients, note that many “less common” side effects of drugs are required to be included because they were reported during one or more human trials even though all reasonable parties would agree they are not associated with the drug itself. Patients often confuse mast cell reactions both to drugs and to inactive ingredients, as well as other more clearly relevant and obvious causes of their symptoms, with these rare “side effects” since they can locate a report of their association (and, if not, you can almost guarantee someone in a support group will claim to have experienced them and attributed them to the drug on discussion). This can cause either stopping the needed drug when something else is in fact responsible for the patient's symptoms or not taking mast cell medications, including rescue medications, when necessary because these symptoms are assumed to be “just a side effect” of the drug. If you look hard enough, almost every possible symptom, from the flu to diabetes, to all those “but it is a lesser known effect of” symptoms must be listed somewhere as a side effect of almost every drug available; when you're looking for confirmation of something that's neither true nor relevant, you will be able to find it. (This is not to diminish the often serious reactions many mast cell patients have to certain drugs and inactive ingredients. See Triggers.)