Doctor insights on:
Adult Onset Systemic Mastocytosis
Mastocytosis is a condition in which the body produces too many mast cells. These overgrown mast cells can be confined to the skin (cutaneous mastocytosis), or can be located in the bone marrow and throughout the body (systemic mastocytosis). Symptoms of these disorders vary by location and type, but are thought to be caused by the release of chemical mediators like histamine ...Read more
See a specialist!: Treatment of aggressive systemic mastocytosis can be extremely complex. If at all possible, you should see a specialist with experience treating this disorder. The mastocytosis society maintains a list of specialists, which can be viewed at http://tmsforacure.Org/patients/research_centers_1.Php. There are ongoing clinical trials for treatments that may help slow the progression of the disease. ...Read more
Widely variable: Overall about 60% are dead in ten years, 80% on 20 years but 10% are long-term survivors; there are no cures. A lot depends on the genetics of your lesion. Here's the best article http://bloodjournal.hematologylibrary.org/content/113/23/5727?sso-checked=1 ...Read more
Control of symptoms: After diagnosis, treatment is mostly focused on controlling symptoms. Flushing, itching, and (to some extent) GI symptoms are helped by antihistamines +/- leukotriene antagonsists (e.g. Monteleukast). More severe GI symptoms are treated with cromolyn. Cromolyn mixed with lotion can sometimes help severe itching. Epipen is used for anaphylactic episodes. See a specialist in masto for more info. ...Read more
See below: Systemic mastocytosis, often termed systemic mast cell disease (smcd), is a heterogeneous clonal disorder of the mast cell and its precursor cells. It is now classified as a myeloproliferative neoplasm. It is characterized by mast cell infiltration of extracutaneous (not skin) organs. ...Read more
Usually not: Most people with systemic mastocytosis (sm) have a normal lifespan. Episodes of anaphylaxis with sm can be dangerous if not treated properly, so it's important to use Epipen and lay flat with the feet elevated slightly. Rarely, sm can be aggressive or associated with a leukemia. In these cases, lifespan may be shortened, but the sm may respond to chemo. See a specialist in masto for more info. ...Read more
Usually normal: Most people with a systemic mastocytosis have the 'indolent' variey, in which case their life span is the same as anyone else's (provided they get appropriate treatment for any anaphylactic reactions). There are very rare cases that we call 'aggressive.' in this case, it may shorten expected lifespan depending on just how 'aggressive' it is, but some of these may be amenable to treatment. ...Read moreSee 1 more doctor answer
Usually normal: Most people with a systemic mastocytosis have the 'indolent' variey, in which case their life span is the same as anyone else's (provided they get appropriate treatment for any anaphylactic reactions). There are very rare cases that we call 'aggressive.' in this case, it may shorten expected lifespan depending on just how 'aggressive' it is, but some of these may be amenable to treatment. ...Read more
In systemic mastocytosis, what is the difference between whole blood and peripheral blood tryptase test? Thank you.
Same test: Please forgive me. From what you've listed -- "light dengue symptoms" 9 years after, expecting an overpriced oral B12 to help, concern over perfectly healthy blood pressures, mastocytosis w/u without any clear reason -- I suspect you are symptomatic partly due to some serious situational stress in your life. Focus on any help with this even though you do need to continue the mastocytosis workup. ...Read more
Please, who may help me with my systemic mastocytosis? Was discovered 22years ago in mayo clinic. - jacksonville, fl. Thanks!
Consult: Would consult with an allergist, gastroenterologist and hematologist. ...Read more
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