The Eleven Principals of (Successfully) Treating MCAS: Principal #7

Hello again, I hope you’re enjoying reading my series on “The Eleven Principals of (Successfully) Treating MCAS” as much as I enjoy sharing them.

You can find these principals in the 25th chapter of Dr. Afrin’s book, Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity.

I am in no way affiliated with Dr. Afrin but as a patient (not his) I find his advice and expertise invaluable. He has helped my doctor and I find success in treating my own MCAS, which is why I’m reviewing his book (including these principals) right here. I encourage you to pick up a copy for yourself, and one for your doctor, too!

We’re up to the seventh principal now. This one, like the others, has perfectly reflected my own experience in successfully treating my MCAS.

Principal #7: The Simpler The Better

Many MCAS patients wind up on zillions of prescription medications, over-the-counter medications, and “supplements.” The reasons their regimens become so complex are obvious. They visit a zillion doctors for their zillion symptoms and acquire a zillion diagnoses to explain those zillion symptoms, and each doctor prescribes one or more therapies and interventions (medications, environmental adjustments, exercises, and even surgeries) to address those symptoms.

I had given up on doctors quite a few years ago and just suffered without any medications for a very long time. I didn’t have much of a choice since they usually didn’t work, almost always made me feel worse and often caused me to break out in horrible hives, which I never understood.

The same thing happened when I took OTC antihistamines, pain relievers, supplements or “natural remedies” for too long. Either they did nothing and I quit within a few days or I ended up worse off so I stopped taking them after a week or two.

It wasn’t until I first began treatment targeted specifically for MCAS that I began to see substantial positive changes. The problem was, I was still very, very sick underneath the mast cell medications and I was having to add more and more of them in higher doses to try to keep on top of my symptoms. My disease was progressing despite the medicines and there seemed to be no end in sight, until I realized what the problem was.

It was still scary to give up the medicines that were helping, even though I could see they were harming me at the same time. Dr. Afrin addresses this in the seventh principal:

So because MCAS patients often have felt so awful in so many different ways for such a long time, any improvement (even when minimal) from a new intervention is seen as justification for continuing it regardless of what its long-term financial cost might be or what its potential for causing other harmful effects might be.

In my case, the cyproheptadine, ranitadine and Doxepin were covering the allergic symptoms pretty well but were unfortunately exacerbating the inflammatory ones so the trade off was not worth it. My doctor was adding more medicines to try to help (like Singulair), and I was trying OTC stuff (like aspirin and quercetin) with no luck in controlling the inflammation (caused by the other medications themselves), but what I really needed was to take this bit of advice to heart:

To limit potential for medical troubles and unnecessary financial expenditures, MCAS patients should eliminate from their regimens all interventions that have not clearly resulted in significant, sustained improvements.

He suggests reassessing whether or not interventions that have been long part of our regime are still necessary if we find a new therapy that works. Sometimes something new can replace, rather than compliment, something old.

He does caution us to remember Principal #3 try to change only one thing at a time. I’ve learned firsthand that this is so important. Maybe the most important bit of advice he offers, in fact!

It sounds crazy, but in my case “simpler is better”works. I am on minimal amounts of medication right now while practicing strict trigger avoidance and haven’t felt this good in a very, very long time. Maybe ever. This is what has been working for me, along with all the other principals laid out in chapter 25.

I hope these principals help you, too! And I hope you’ll join me for the next four which I’ll be sharing in the coming days and weeks and again, grab a copy of Never Bet Against Occam if you can. It’s literally the best investment in my health I’ve ever made.

Good luck!

 

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