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Joan
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Hi Peter,
I have SM, too, confirmed by WHO criteria and a bone marrow biopsy. I have the c-kit mutation and very elevated tryptase. My symptoms are usually well-controlled by daily meds and lifestyle. Much of the information on this site applies to all mast cell disorder patients, especially daily medicating, treatment of anaphylaxis, lifestyle changes that help symptoms, foods and medicines that are generally tolerated and which to avoid, how to approach surgery safely, etc.
In my opinion, one important difference is how we're followed by doctors and what types of regular testing should be done. SM patients (and some others) need to be checked at regular intervals to make sure nothing is becoming aggressive. Tryptase, CBCs, and other tests give doctors information that will tell them if the SM is stable (indolent), smoldering (SSM), or aggressive (ASM). With SM especially, patients need to be checked to rule out other blood disorders that can sometimes appear. Other blood tests can give them important information, such as whether patients have low vitamin D or B12, since we seem to have malabsorption troubles sometimes.
Testing for C-Kit or other mutations can provide information in case a patient needs chemotherapy treatment at some point. Some treatments are more effective in patients without mutation(s) and don't work on patients who have specific ones, and vice-versa.
Bone density tests show if there is osteoporosis from the SM. Bone X-rays show whether there are bone lesions that need to be watched. If there are a lot or they are large or if there are breaks, then more aggressive treatment might be necessary.
If the mast cells are not proliferating, then, in general, these problems don't occur. There are exceptions, of course, especially in patients who don't quite meet the diagnostic criteria for SM, but who do have some minor criteria. They may be heading towards SM, but just aren't far enough along to find it.
Other problems in SM patients that might need more treatment would be finding decreasing numbers of other blood cells because the mast cells are taking up too much space in the marrow. There also can be involvement in other organs, such as enlarging of the liver and spleen that can affect health. These things need to be watched.
I'm not a doctor, so know I've greatly simplified this subject and only scratched the surface. SM is a complex disease, and it requires experts to follow it and treat it properly. I believe SM patients can benefit from being seen by a hematologist who is familiar with it, as well as being followed regularly by allergists/immunologists who can keep medications optimized, order testing, and educate patients in feeling better. Patients with GI symptoms might benefit from seeing a GI specialist who knows about the effects of mast cells on the GI system.
If you feel you're not stable right now or that it's taking increasing medicines to keep yourself stable, you might want to talk this over with a mast cell expert. It might give you peace of mind to know, if you don't already, whether your SM is stable. If you felt better when you weren't working, is disability a possibility? I can't remember where you live, but if you have an SM diagnosis in the U.S., you probably will qualify.
There are several new medications in clinical trials right now (Midostaurin is one) that are hoped to help ASM patients with minimal side effects, if that should be relevant at some point. Hope this addresses some of your thoughts.
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