Indolent Systemic Mastocytosis: Understanding Treatment and Managing Symptoms

The medication that I'm on has shifted over time.

There are new ones on the market that didn't exist when I was first diagnosed, and those have been really helpful.

Other things that are used to treat my disease are mostly designed to treat the symptoms, not the cause of the disease.

And so it's like putting a Band-Aid on things, but they do help me not react as severely.

That distinction, treating the symptoms versus treating the cause, is the single biggest shift in ISM care in the last few years.

The medication that I've had the most success with so far has been the tyrosine kinase inhibitor.

It wasn't the magic pill I think that like I really hoped it was, but it has made my life a lot easier.

I bounce back a lot faster from my allergic reactions than I had been prior to that.

And that makes life a lot easier.

Most of what Rachel has been taking works downstream, antihistamines and related drugs that blunt the reaction after the mast cells have already fired.

But tyrosine kinase inhibitors work upstream on the mast cells themselves.

It's the newer approach, and it's the one that's changed the field.

And it matters enormously who you're having that conversation with.

Finding doctors that will treat you like a person and not just a patient and be like a

team player because you know your experience better than they do.

My actual specialist lives in Boston and I am in the Philadelphia area.

So that's obviously a hike.

So I don't see her very often, which sometimes means that I'm relying more on my local doctor who doesn't know quite as much.

I have yet to meet a primary care doctor who's, I think, ever met a patient who has indolent systemic mastocytosis before me.

This predicament, working with a specialist hundreds of miles away, is far more common with a condition like ISM than you might think.

Here's Dr. Tracy George, a hematopathologist at the University of Utah.

We're the only academic medical center around for hundreds and hundreds of miles.

So not surprisingly, patients don't want to travel several hours to get their care here.

But their physician can reach out to the center of excellence and be cared for by the original physician themselves.

You know, medicine is a shared game, and we're all trying to get the best diagnosis for the patient and the best treatment.