Ask The Westchester NY Mast Cell Activation Syndrome (MCAS) Specialists: Dr. Tania Dempsey & Dr.
I am a 24-year-old MCAS patient and my health is declining. I am having difficulty finding a local physician. The last doctor I contacted told me that he doesn’t have the resources to take on a difficult case like mine. What should I do?
As a direct consequence of the great many mediators naturally produced by the mast cell and the great many effects each mediator exerts in different tissues throughout the body, MCAS is a very complex illness – so complex its very existence wasn’t suspected until the early ’90s and wasn’t demonstrated (by case report in the peer-reviewed medical literature, anyway) until 2007. There is nothing about this disease which is simple or easy. If it were simple, we would have figured it out – diagnostically and therapeutically – a long time ago. The only problems left to be identified and solved are the difficult ones.
Some may call me biased (given my present interests in mast cell disease) for saying the following, but it has to be kept in mind I started coming to understand mast cell disease only *after* I had been in general academic hematology/oncology practice for 13 years (and that was after 10 years of training): I don’t know of any other human disease that is more complex and “more multisystem” than mast cell disease. As such, optimal care of MCAS requires a great array of resources, and no doctor can possibly singlehandedly provide all the care needed by an MCAS patient. Furthermore, even though the disease is complex in all MCAS patients, it obviously is the case that some MCAS patients unquestionably are far more complex than others, thereby requiring even a greater array of resources for their care. A physician (or, for that matter, any other type of health professional) who knows he does not have the resources – the personal time, the laboratory resources, the nursing resources, the network of other specialists also willing to provide the full extent of help he intuits the patient will need – is well within his rights to decline to take on such a patient and may actually be doing that patient a favor by not taking that patient on. It is most definitely *not* the case that suboptimal care is necessarily still better than no care at all; there are many scenarios in which suboptimal care can actually cause more problems than it solves. As such – and, again, I realize this is a biased opinion, as I, too, walk in a doctor’s shoes, especially the shoes of a doctor who regularly treats MCAS – there will not always be a readily identifiable solution to the problem described in this question.
All that I can recommend in such a situation is to continue trying to find a local physician who is willing to learn about the disease and willing to at least *try* to help. MCAS is fundamentally a multisystem disease, and there is no specialty which “owns” the disease. Therefore, both generalist doctors and doctors of any particular specialty are “ripe candidates” for being doctors who tend to patients with mast cell disease, but given that virtually no doctors (generalists or specialists) have been trained in mast cell disease or have acquired significant experience in mast cell disease, it really is a matter, for most patients, of instead finding any doctor who is willing to learn and willing to try, especially in an area outside of his/her formal training. I acknowledge it often is challenging to find such doctors, but it also has been my experience that such doctors do exist (though often few in number, are often “carefully guarded secrets”) in most communities and the trick, therefore, lies in *finding* them, for which I don’t have any good, generally reliable recommendations and instead it comes down to leveraging one’s networks of contacts as much as possible and not giving up. Even if one consults a distantly located MCAS-competent physician, it is difficult, if not impossible, for any physician to responsibly personally prescribe (let alone manage) treatment of a distantly located patient (regardless of the disease being treated).
As such, a *local* doctor (or other health care professional with prescribing authority) who is “willing to learn and willing to try” is still going to be the most important asset any MCAS patient is going to have to put in place to have a decent chance of attaining a satisfactory outcome with the disease. Going to see a distantly located physician can only accomplish so much; it’s the local doctor who unquestionably is going to do most or all of the “heavy lifting” in the process of helping the patient find that regimen providing a satisfactory outcome.
Some patients who simply cannot find effective local resources despite extensive efforts wind up relocating, but that’s a challenging (even sometimes fundamentally infeasible) proposition for many MCAS patients, especially more severely afflicted patients.
Any more sensitive allergy tests on the horizon for us? It seems most of our allergies don’t show up on current allergy tests (reactions not big enough?)
We are unaware of “any more sensitive allergy tests on the horizon,” but then again, we are not allergists.
That said, it is worth noting that that results of allergy tests (in blood or skin or otherwise) in patients with mast cell disease commonly are starkly inconsistent with the reactions clinically observed in those patients. Furthermore, it even is the case that results of allergy tests are quite inconsistent from one determination to the next *in the same patient*, even when such separate determinations are made only a few weeks apart. The mechanism(s) underlying such stark variability in response to the same test at different points in time, and underlying such contrasts between test results and clinically observed behavior, are quite unclear (at least to me). Much more research is needed to understand these phenomena, and given the potentially quite significant consequences of an allergic reaction and thus the importance of the ability to *predict* (reliably!) what a patient will or won’t react to, this would be very valuable research to perform.
Is MCAS progressive? Or can it be reversed somehow so that one can eventually and completely stop the oral cromolyn (and other management meds)?
Although I’m unaware of any studies specifically investigating this issue, it has been my experience that, over time (typically many years to decades), MCAS indeed unfortunately is progressive, more typically as a series of “step-wise” significant escalations in baseline mast cell misbehavior (which tend to shortly follow (by a few days to a few months) a major physical or psychological stressor) rather than as a slow/insidious, steady escalation. This statement should not be “over-interpreted” as an assertion that the disease *will* escalate after any stressor, or even after any major stressor. Rather, it just says that when significant escalations emerge, it’s more commonly the case that they emerge shortly following major stressors rather than the case of random emergence. Furthermore, once such a significant escalation emerges, it usually is a permanent shift in the baseline misbehavior of the dysfunctional mast cells. Importantly, that statement doesn’t necessarily mean it’s impossible to regain control of the disease and rein in at least some of the heightened symptoms – trials of further interventions (pharmacologic and otherwise) might well be warranted at that point in pursuit of a goal of regaining satisfactory symptom control – but it does say that a significant escalation in baseline dysfunction of the mast cells is usually a permanent escalation.
I would like to hear your opinion on natural antihistamines and anti-inflammatories. Trying to find out what additive in my H1/H2 that is causing a reaction.
In general, pharmacologic antihistamines and anti-inflammatories are better studied, more potent, and more effective than “natural” antihistamines and anti-inflammatories. However, there are some patients who are satisfied with the effects gained from “supplements” which contain “natural” antihistamines and anti-inflammatories. It is important to recognize that manufactured supplements are no less likely to bear additives than manufactured drugs, but in the United States, thanks to politics, the supplement manufacturing industry is far less regulated than the drug manufacturing industry. Thus, a supplement maker is not required to reveal on the label of a product it manufactures the full set of ingredients in that product, and it often is simply unknown to the consumer what is in a supplement product; some manufacturers don’t even reveal the active ingredient(s), much less the inactive ingredient(s), they incorporate into any given product, and thus, in my opinion, one has to be much more cautious (at least in the U.S.) in trying “supplements” than in trying “drugs.” Furthermore, as a direct consequence of the disease, many (not all, but many) MCAS patients have a propensity to adversely react to products they take/use, so it is just as important for an MCAS patient to try just one supplement product at a time as it is for an MCAS patient to try just one drug product at a time, and, in general (there are always exceptions for specific supplements and drugs), if no obvious, significant improvement has been seen after a month of trying a given supplement or drug at a meaningful dose, then that supplement or drug is not going to be part of the “solution set” for that patient and that supplement or drug should be abandoned and the patient and provider should then consider what pharmacologic or non-pharmacologic maneuver to try next.
Do MCAS patients react differently to supplements?
There is no question that many of my mast cell patients are sensitive to supplements. In particular, the fillers that supplements are mixed with are often the problem. I manufacture the supplements in my dispensary because I’m always looking for the purest product with the least amount of fillers. But even still, sometimes we have to compound certain nutrients and even medications so that we can eliminate or minimize the fillers to decrease the potential for a reaction.
Whereas other patients without MCAS could walk out of my practice on a basic regimen consisting of methylcobalamin B12, methyl-folate, fish oil and a probiotic and be fine, with my MCAS patients, that might not be the case.
Everything has to be started one at a time for the patients I treat with Mast Cell Activation Syndrome. I need to eliminate any fillers that may be an issue for them, although we may not know for that patient what filler is most problematic. Sometimes it’s not just the filler that causes patients to react but rather that some vitamins increase a process known as methylation, which we often talk about as being important. However, sometimes these nutrients lead to over-methylation, which can cause side effects and potentially more reactivity of the mast cells. Therefore, it is quite challenging!
On the other hand, when you enter this piece to the patient's treatment plan, it can make a big difference. You have to be very patient and do it low and slow. Adding a vitamin B12 supplement to a patient who is deficient, experiencing fatigue (because of their MCAS) and not detoxing well, can be extremely helpful.
If you have additional questions on Mast Cell Activation Syndrome (MCAS), be sure to leave them on our MCAS Facebook page here. We will be putting out a new blog post every Friday answering a batch of randomly selected questions posted on our Facebook page.
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 Purchase, NY. To make an appointment with Dr. Afrin, please call the office or contact us here