Finding an Effective Personalized Therapy for Mastocytosis can be Frustrating, but it is Possible

What Exactly is Mast Cell Disease

According to The Mastocytosis Society (TMS), there are three forms of mast cell disease. All involve the malfunction or over-development of mast cells in the body. Mast cells are a type of cell essential to the body’s immune response. The three types of mast cell diseases are mastocytosis, mast cell activation syndrome (MCAS), and hereditary alpha tryptasemia (HAT). Mast cells in people with mast cell disease are extremely sensitive and can react inappropriately when they’re triggered.

Mast cell conditions can be debilitating. However, there are effective treatments which can significantly improve patient’s quality of life. Unfortunately, the road to find the specific treatment which will be most efficacious for each individual patient can be long and highly frustrating. Mast cell diseases are very unique conditions and each patient will necessitate their own individualized treatment. Even when they find one treatment that suites them, they may later have an adverse reaction to the therapy and necessitate and change in regimen.

The Struggle of Finding the Right Medicine

The primary form of therapy for mast cell diseases is not truly a therapy at all but avoidance of things that may trigger the symptoms; medication itself is secondary. However, some triggers simply cannot be avoided. They can be caused by things in the environment or even hormones produced by the patient’s own body. Even the medications prescribed to treat mast cell disease can have binders, preservatives, and dyes that can act as triggers. This makes things extra complicated.

Imagine this: a patient is prescribed a medicine that in theory should help them. Unfortunately, they have a mast cell reaction to it. This doesn’t mean that they were having a reaction to the active ingredient in the medication necessarily, but to some other ingredient in the pill. That means they have to try a different pill made with the same active ingredient but different overall composition. Some patients are able to receive a simple formulation of the drug they need through a compounding pharmacist who is able to custom prepare it. However, not every patient has access to one of these pharmacies. While some do mail orders, it can still be a complicated process. Not only that but patients can still have a negative reaction to the compound capsule. If this occurs, it’s time to finally give up on the active ingredient right? Wrong. The patient may still have a positive response to the active ingredient when the compound capsule is opened up and the active ingredient is ingested on its own.

Now, let’s say that it becomes clear that the patient actually does have a negative response to the active ingredient that first gave them problems. Researchers say, they still shouldn’t give up hope on the entire class of drugs. It’s actually said that patients should try at least one or two more drugs from the same family. For example, some patients have negative reactions to clonazepam, but then have a positive response to its sister drug lorazepam. The same pattern of response happens in reverse for other patients.

Not only must patients go through a process like this to find a treatment for the mast cell disease itself, they must also go through it for other basic medications such as vitamins, anxiety medication, and supplements. Unfortunately, what works for a patient for a long period of time may suddenly cause a bad reaction without warning.

Then patients must begin the cycle of finding a beneficial therapy all over again.

This ongoing cycle takes time, persistence, and an incredibly high level of patience- both for the patient and their doctor.

“It’s hard to imagine a disease more complex than mast cell activation disease.”

Many of these frustrations are explained in Dr. Lawrence Afrin’s book called Never Beg Against Occam.

Things to Remember

This disease can be extremely frustrating, especially when you have a reaction and no matter how hard you try, you never figure out exactly what your trigger was. No one patient with mast cell disease is the same and even someones normal triggers may change completely over time.

Below are some recommendations from Michelle Dellene to help you navigate the seemingly never-ending cycle.

  • Keep a journal of symptoms, food, and medicines to help you understand your triggers.
  • Have a friend nearby when you are trying a new medication.
  • Keep rescue medications such as epipens and inhalers on hand just in case.
  • If you don’t know what caused your reaction, treat your symptoms and rest. Then try to analyze what happened after you’ve recovered.
  • Remember your responses can be delayed, so don’t dismiss potential triggers from things you took a few days before.
  • Find a doctor you trust and work well with. View this United States Directory if you need help finding one.
  • Check out this reference sheet on how to address concerns with your doctor.
  • Check out this wallet card that you can take with you to your doctor.
  • Don’t change the dose of any of your medications on your own. Work with your doctor to ensure your safety and to give yourself the highest chance of response.

Some patients are able to manage their illness with strict trigger avoidance, diet, and using primarily natural ingredients. However, others necessitate chemotherapy, immunotherapy, or both in order to manage their disease. These in and of themselves require careful evaluation to find a safe and effective formula for the individual patient. But, no matter what works for you or doesn’t, know you’re not alone in this journey. It can be a long and frustrating cycle, but there are treatments out there which have the potential to improve your quality of life.

You can read more about this perspective on mast cell diseases and additional recommendations here.


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