The Eleven Principals of (Successfully) Treating MCAS: Principal #8

Hello again and welcome back to my series on the eleven principals for successfully treating MCAS. We are up to number eight now and it’s a pretty important one (as they all are!).

If you haven’t read the first seven principals you can do that now by clicking here.

You can find these principals in Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity, (aka the “MCAS Bible” as I fondly refer to it) by Dr. Lawrence Afrin.

Make sure to put it on your Christmas wish list if you haven’t already!

So let’s jump right back in.

Principal #8: Try and Try Again (and again and again)

Dr. Lawrence is not exaggerating when he says that mast cell activation disease is extremely complex. It can be difficult to diagnose and it can be difficult to treat. There are a LOT of treatment options out there, however, which is good news for those of us looking for relief. There’s a good chance we will find it, too, if we follow these principals.

Principal #8 builds on the previous principals, especially principal #2: Be Persistent & Patient.

Identification of the optimal regimen for the individual MCAS patient requires patience and persistence (on the part of the patient, the patient’s support system, and the patient’s health care providers, most especially the one who is primarily coordinating the treatment trials) and a methodical approach.

The biggest key to successfully treating our MCAS is to not give up as he has explained in regards to finding the right doctor and the right therapies. Remember principal #1? Hang In There!

Based on what I’ve seen these last seven years in more than 1,000 MCAS patients, the odds of getting better are good, by which I mean most patients are eventually able to identify some regimen that helps them feel significantly better than their pre-treatment baseline the majority of the time.

Here’s what he has to say in principal #8 specifically about finding the right treatment:

Just because you failed to improve upon trying one drug of a given class does not necessarily mean you will fail to improve with all drugs of that class.

He again brings up the topic of fillers, dyes and other inactive ingredients possibly interfering with the active ingredient. He explains:

Some of my patients have even found that both commercial and custom -compounded formulations of a given medication are intolerable — but that it sometimes (with some patients and some medications) is the case that when the custom-compounded capsule is opened and the active ingredient therein is taken all by itself, it works well.

As usual, he is spot on. I have found this to be the case for myself with the compounded acetaminophen I am using for pain relief. The capsule itself had corn in it (I’m triggered by dairy, soy and corn) even though my doctor requested there be no corn, soy or dairy (or dyes etc) in the capsule. The pharmacist didn’t think to check what the capsule itself is made of and I learned the hard way that it had corn.

It can be very frustrating working with a compound pharmacy to get what we need, as I’ve unfortunately experienced.

It can also be frustrating (and expensive!) to keep trying new medicines over and over. Still, if we want relief, we really don’t have much of a choice, do we? Of course we would do well to heed the advice in principal #7 when it comes to trying new medicines.

Simpler really is better sometimes!

It’s not just the potential triggers that can cause us grief, though. Sometimes one medication in the same class as another will work well (or not) for a particular patient. According to Dr. Afrin:

…each different medication is fundamentally a different molecule that has the potential to interact with mast cells differently. For example, I have seen patients who reacted adversely to lorazepam but then benefited greatly from lorazepam’s sister drug clonazepam. And vice versa!

He encourages us to consider trying more than one drug from each class and carefully evaluating it’s efficacy. We may need to try different formulations to find the one that is trigger free and tools like this one at DailyMed can help us a LOT. Compound pharmacies are also sometimes necessary (although getting insurance to cover the cost is tricky which I’ll address in a future post).

Remember, we are all very individual with this disease so what works for me may not work for you (and vice versa!) but we owe it to ourselves to try to find what works best for each of us so that we can (hopefully) successfully manage our disease.

Good luck and I hope you join me next time for principal #9.

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