Ask The NY MCAS Expert: Mast Cell Activation Syndrome Questions Answered
Is it possible to have a slightly elevated N-methylhistamine level if an individual’s dietary histamine level was extremely high without having MCAS?
Simply having an elevated level of a mast cell mediator (whether N-methylhistamine or any other mast cell mediator) does not make for a diagnosis of MCAS and is not known to infer anything about whether a patient has MCAS. It must be kept in mind that mast cells *normally* activate in response to a wide variety of assaults upon the body, and thus it's almost certainly the case that the vast majority of elevated mast cell mediator levels which might be detected in the population reflect normal mast cell reactions. The diagnosis of MCAS, rather, is made when there is a *combination* of a clinical history consistent with chronic/recurrent abnormal mast cell mediator release, absence of any other evident disease which can better account for the full range and duration of the all the symptoms and findings in the case, and laboratory evidence of mast cell activation; some clinicians also regard symptomatic response to mast-cell-targeted therapies as evidence of MCAS.
I just saw an article saying turmeric interferes with antihistamines and antacids (Zantac, Pepcid), warning "you might experience nausea, stomach ache, bloating and esophagus issues." Would you agree? I've also heard it can lower blood pressure, which is already often low in MCAS and EDS and can increase bruising and bleeding, which is an EDS issue. Would you consider turmeric/curcumin safe to regularly use by EDS’ers and those with MCAS?
Any medication product (whether prescribed, over-the-counter, or a "supplement") has potential for causing side effects. In a mast cell patient, it is always possible that one or more of any side effects experienced are due to the *drug* (i.e., the “active ingredient") that's in the product. It’s also possible that one or more of any side effects experienced are due to one or more of the "excipients" (fillers, binders, dyes, preservatives) also present in that product. Thus, in the example cited in the question, it's possible that any side effects noted might be coming from the turmeric itself or, perhaps even more likely, from one or more of the excipients in the particular turmeric product being consumed. If one product containing a certain active ingredient (turmeric or otherwise) were tried and found problematic and then another product containing the same active ingredient but different excipients were tried and found non-problematic, then the patient has proven the problems are not from the active ingredient but rather from one or more of the excipients present in the problematic product but not in the non-problematic product. This goes back to "Step 1” in treating most forms of mast cell activation disease - identify one's triggers as best as possible and do one's best to avoid them. It is very difficult for any mast-cell-targeted medication to gain good control over the disease when the patient is simultaneously ingesting (or otherwise exposing herself to) triggers. This why "Step 1" is so important that it's Step 1 now and will always be Step 1 for the rest of the patient's life.
I'm curious about treatment options. In following Dr. Afrin's protocol, it is a systematic trial and error with tons of meds and it can become difficult to tell what is working and what isn't. It seems like some meds also plateau and it becomes difficult to know when to simply up the dose or if that means a medication is not working and to discontinue it.
A medication which clearly provides significant benefit should be retained in the regimen; a medication which does not meet that high bar should be dropped. For most of the medications which are reasonable to try for mast cell activation disease, it only takes about a month's trial to figure out whether the medication is providing significant benefit or not. In my experience, when the medications are tried which happen to be the right "molecular keys" for the particular "molecular lock" that is the individual mast cell activation patient's particular variant of the disease, the patient will soon return and it will be obvious that that medication is a "keeper." If, on the other hand, the best the patient can say about a particular medication after a month's trial is that it "sorta kinda maybe" helps the patient feel "a little bit" better, that's usually not nearly sufficient justification to retain the medication in the regimen. If at any point it is thought that a given medication is no longer providing significant benefit, it should be stopped or weaned (as appropriate for that medication) to see what happens. No patient with any disease should be taking one more milligram of one more medication if it is not clearly providing significant benefit. If significant benefit from a drug appears to be suddenly lost, there arises a question of whether the formulation of that drug being supplied to the patient has changed, i.e., perhaps the pharmacy has switched from one formulation of the drug to a different formulation containing different excipients which now are triggering the patient’s dysfunctional mast cells, overriding the benefit being provided by the drug itself.
Is there any initiative or research being done to try and fit the chemical profile of individuals to customize a most likely or targeted treatment?
Not to my knowledge. We don't yet have anywhere near a sufficient understanding of how and why dysfunctional mast cells behave the way they do to be able to provide the "personalized medicine" approach for mast cell disease which of course is the goal for management of all diseases.
For those of us who find an effective medication or supplement that works then wears off, what is the best approach from there?
Mast cell disease behaves so variably from one patient to the next that it's dangerous to provide general recommendations such as being requested in this question. One of the issues I would wonder about in the situation described, though (especially if the drug has been beneficial for many months to years and then suddenly becomes unhelpful or even offensive), would be whether there's been a change in the medication/supplement supply. Perhaps the pharmacist switched a helpful medication -- at the behest of the patient's insurer, to save a dollar a month -- from a little round tasteless odorless white tablet manufactured by one pharmaceutical company to an identically sized and shaped tasteless odorless white tablet manufactured by another pharmaceutical company, such that the only way to tell the difference between the two products -- even though they might contain very different excipients -- would be to look at the name of the manufacturer shown in fine print on the bottle's label. Or perhaps -- if an initial beneficial effect wears off within a few days to a few weeks -- the patient's mast cell activation disease has "learned" to react to one or more of the excipients in the particular formulation of the drug being taken, such that intentionally switching to a different formulation with different excipients might suddenly improve the drug's tolerability. It's always possible, too, that the patient's mast cell disease has changed/evolved (even further mutated) and is simply no longer responsive to one or more of the drugs to which it was previously responsive.
Is fasting or tube feeding a viable option to calm mast cells down? How effective is it?
In general, fasting is probably not a good idea in mast cell disease, as discussed in an earlier answer. Tube feeding is a "viable option" in some (not all, but some) mast cell activation patients who suffer so much food-directed abnormal mast cell reactivity in their intestinal tracts that they cannot take in sufficient nutrition. I'm not aware of any studies of fasting or tube feeding in mast cell disease -- studies which would be very hard to do well given how variably mast cell activation disease behaves from one patient to the next -- in order to be able to provide any estimates as to "how effective" such approaches are. In my experience, tube feeding is tolerable and significantly helpful in some severely afflicted mast cell activation patients, but certainly not all.
When a bad flare comes on, I know some have a rescue med protocol. Is there any consensus on the best meds to have on hand for such flares?
Only in quite general terms. Again, it's a highly variable disease from one patient to the next. In general, for flares that haven't advanced to the point of being frank anaphylaxis, medicines that make sense for many mast cell activation patients to try -- but which may not be sensible choices for all such patients! -- include extra doses of antihistamines (both H1 and H2 blockers). Some patients come to learn, too, that certain "fast-acting" formulations of certain antihistamines are especially helpful in such situations. For example, for a patient regularly using loratadine in standard tablet/capsule/caplet form, the fast-acting "Claritin Reditab" form can help the patient get extra loratadine into her system more quickly than by just consuming another one of her regular loratadine tablets. Liquid diphenhydramine probably will "go to work" more quickly than diphenhydramine in tablet/capsule/caplet form. Beyond antihistamines, glucocorticoids (for example, methylprednisolone, prednisolone, or prednisone) may be helpful, too, and sometimes benzodiazepines (e.g., lorazepam, clonazepam, or alprazolam) can be helpful. Of course, if the patient is in the throes of frank anaphylaxis, epinephrine (usually with an auto-injector) is always the "go-to" drug (except in the uncommon circumstance in which a patient with known mast cell disease also happens to be on a beta blocker, in which case glucagon is the preferred "work-around" for this situation in which the effectiveness of epinephrine may be impaired by the beta blocker).
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If you would like to see a NY Mast Cell Activation Disorder specialist, Dr. Lawrence Afrin is now seeing patients in a private practice setting at our office in Armonk, NY. To make an appointment with Dr. Afrin, please call the office or contact us here