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Doctor insights on: Skin Mastocytosis

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No doctors, even allergists, we've seen know about mastocytosis beyond "oh. I have heard of it for skin. We live in portland or. Any recommedations?

No doctors, even allergists, we've seen know about mastocytosis beyond "oh. I have heard of it for skin. We live in portland or. Any recommedations?

Absolutely.: Www. Tmsforacure. Org/ is a great resource for patients with mastocytosis. As you know, mastocytosis can be relatively benign to a very serious disease -- depending upon the type and extent of disease. Check with one of the university hospitals for an allergists that may be more familiar with the mastocytosis. You may need to consider a trip to the nih for evaluation. ...Read more

Dr. Brant Ward
44 Doctors shared insights

Mastocytosis (Definition)

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


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Recent diagnosis w/autoimmune disease & skin biopsy result: urticaria or mast cell disease. Shouldn't biopsy give more definitive diagnosis?

Recent diagnosis w/autoimmune disease & skin biopsy result: urticaria or mast cell disease. Shouldn't biopsy give more definitive diagnosis?

Hard to tell: Mast cells are the cells that release histamine in the body. This is what happens in urticaria, so one will see mast cells in biopsies of urticarial (hive-like) lesions. Mast cells can also be found in increased numbers in people with mastocytosis. Thus the biopsies may be similar. As stated by my colleague, the clinical history can be key to the diagnosis. Talk with your doc. ...Read more

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How to control mastocytosis?

How to control mastocytosis?

Certain meds: Cutaneous masto can be treated with daily oral antihistamines or cromolyn applied to the skin, but sometimes may not need treatment. Systemic masto is usually treated with antihistamines, plus oral cromolyn for GI symptoms and epipen (epinephrine) for anaphylactic episodes. Aggressive forms may only respond to certain chemotherapy agents. See a specialist in masto for more information. ...Read more

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Anyone have mastocytosis? What is it?

Anyone have mastocytosis? What is it?

Skin problem: This is a skin disorder. I recommend asking a dermatologist this question. ...Read more

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Anyone here have treated mastocytosis?

Anyone here have treated mastocytosis?

Skin problem: This is a skin disorder. I recommend asking a dermatologist this question. ...Read more

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What are the symptoms of mastocytosis?

What are the symptoms of mastocytosis?

It varies: Mastocytosis in the skin (called urticaria pigmentosa) are reddish-brown "freckles" on the skin that will hive (think of an itchy, red mosquito bite) when scratched or irritated. Mastocytosis throughout the body can present with flushing of the skin, mental "fogginess, " recurrent (often explosive) diarrhea, or even recurrent episodes of anaphylaxis. See a specialist for more information. ...Read more

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How to treat mastocytosis?

How to treat mastocytosis?

Skin problem: This is a skin disorder. I recommend asking a dermatologist this question. ...Read more

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What is a cure for mastocytosis?

Skin problem: This is a skin disorder. I recommend asking a dermatologist this question. ...Read more

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Is there a cure for mastocytosis?

Skin problem: This is a skin disorder. I recommend asking a dermatologist this question. ...Read more

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Anyone have a baby with mastocytosis?

Anyone have a baby with mastocytosis?

Yes: There are no accurate data on the frequency of mastocytosis. Annual incidence of 5-10 new cases per million population is estimated. In dermatological practices and hospital departments of dermatology, 1 of every 1000 to 8000 new patients has mastocytosis. The most frequently encountered forms are cutaneous mastocytosis and indolent systemic mastocytosis. The least common is mast cell leukemia. ...Read more

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What is done for systemic mastocytosis?

What is done for systemic mastocytosis?

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 (epinephrine) is used for anaphylactic episodes. See a specialist in masto for more info. ...Read more

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What are the signs of mastocytosis or mcas?

What are the signs of mastocytosis or mcas?

Hives, anaphlaxis: Cutaneous mastocytosis typically presents as small brown splotches that turn in hives or welts when irritated, but it can affect the entire skin surface, too. Systemic masto and MCAS typically presents with spontaneous episodes like anaphylaxis--dizziness, fainting, flushing, nausea, diarrhea, and sometimes hives and trouble breathing. See a specialist in masto for more info. ...Read more

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What do you know about systemic mastocytosis.?

What do you know about systemic mastocytosis.?

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

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Help! I have aggressive systemic mastocytosis. What do I do?

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

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I have a 5 month old with mastocytosis. What advice for care?

I have a 5 month old with mastocytosis. What advice for care?

Not Much: Usually the only major symptom is itching. This is treated at this age locally with antihistamine or steroid cream. Otherwise is a benign condition most of the time. ...Read more

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Please please tell me everything about systemic mastocytosis.?

Skin problem: This is a skin disorder. I recommend asking a dermatologist this question. ...Read more

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How can you tell if mastocytosis is systemic or just cutaneous?

Evaluation: Systemic involvement will be more suspicious when the serum tryptase level is significantly elevated and you also have other generalized symptoms like GI problems or abnormality in the blood counts for instance. A biopsy of the suspected involved organ like biopsy of the bowel, or bone marrow biopsy will tell you definitively whether it is systemic or not. Discuss with your doctor. ...Read more

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How much time does the average person with systemic mastocytosis live?

How much time does the average person with systemic mastocytosis live?

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

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Is 'flushing' symptom heat felt all over the body suddenly? For mastocytosis?

No.: Flushing is the sudden occurrence of redness and heat on the face and upper trunk. When due to mastocytosis it is often accompanied by palpitations, low blood pressure, dizziness, chest pain, explosive diarrhea, nausea, or fatigue. Other things, such as rosacea, medicines, and food additives, can also start a flushing attack. ...Read more

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What is the difference between mast cell activation syndrome and mastocytosis?

What is the difference between mast cell activation syndrome and mastocytosis?

Yes they Differ.: These are two separate conditions. Symptoms may be similar but the cause is different. In mastocytosis, patients have too many mast cells (MC). Because they are so plentiful, when one activates the other MC close by, will also release their chemicals (Histamine, Leukotrienes, prostaglandins, etc). MCAS is a condition that the numbers of MC are normal but overactive. Degranulating spontaneously. ...Read more

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What is the recommended diet for Mastocytosis patients? I have been given conflicting answers.

What is the recommended diet for Mastocytosis patients? I have been given conflicting answers.

Not aware of any: However if anything triggers your symptoms, then you will have to stop it. Personally, I think red wine should be avoided since it contains a histamine-releasing factor. ...Read more

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Mastocytosis has specific diagnostic criterion. Does mast cell activation syndrome have specific criterion? If so, what is the criterion?

Mastocytosis has specific diagnostic criterion. Does mast cell activation syndrome have specific criterion? If so, what is the criterion?

Complex: First you must have an elevated baseline tryptase level along with symptoms. Then you will need a bone marrow biopsy to determine what type of mast cell disorders you may have since they all behave the same way. ...Read more

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What is mastocytosis?

What is mastocytosis?

Too many mast cells: Mastocytosis is an overgrowth of mast cells, immune cells that release histamine and other chemicals upon activation. There are several forms, from small collections of cells in the skin (urticaria pigmentosa) to increased numbers in the bone marrow and throughout the body (systemic mastocytosis). Symptoms vary from hive-like reactions to recurrent anaphylaxis. See a specialist for more details. ...Read more

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Does mastocytosis go away?

Usually: Most cases of cutaneous (just in the skin) mastocytosis start in childhood and will go away as a person gets older. Sometimes the spots may stay but the reactions from them (itching or hives when the spots are irritated) fade over time. Systemic mastocytosis (throughout the body and bone marrow) is much rarer, but usually will not go away. See as specialist in mastocytosis for more information. ...Read more

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Does mastocytosis go away?

Skin problem: This is a skin disorder. I recommend asking a dermatologist this question. ...Read more

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What does mastocytosis mean?

What does mastocytosis mean?

Too many mast cells: Mastocytosis is an overgrowth of mast cells, immune cells that release histamine and other chemicals upon activation. There are several forms, from small collections of cells in the skin (urticaria pigmentosa) to increased numbers in the bone marrow and throughout the body (systemic mastocytosis). Symptoms vary from hive-like reactions to recurrent anaphylaxis. See a specialist for more details. ...Read more

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What exactly is mastocytosis?

Too many mast cells: Mastocytosis is an overgrowth of mast cells, immune cells that release histamine and other chemicals upon activation. There are several forms, from small collections of cells in the skin (urticaria pigmentosa) to increased numbers in the bone marrow and throughout the body (systemic mastocytosis). Symptoms vary from hive-like reactions to recurrent anaphylaxis. See a specialist for more details. ...Read more

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Anyone diagnosed mastocytosis? How?

Anyone diagnosed mastocytosis? How?

Biopsy is best: Cutaneous mastocytosis is confined to the skin and may present with brownish spots that itch or hive when scratched. It can be confirmed by a biopsy of the lesion. Systemic masto involves the bone marrow and presents with whole-body symptoms like flushing or anaphylaxis. High tryptase in the blood can be a clue, but it must be diagnosed by bone marrow biopsy. See a specialist in masto for info. ...Read more

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What is mastocytosis and is it serious?

Mastocytosis: Is an excess number of mast cells. It is usually not an aggressive process. ...Read more

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What can you do to control mastocytosis?

What can you do to control mastocytosis?

Medications can help: Cutaneous (skin-only) mastocytosis can be treated with antihistamines, singulair, (montelukast) and topical cromolyn if the itching, etc., is problematic. The same meds can help systemic mastocytosis, with swallowed cromolyn for GI symptoms. Epinephrine can help resolve anaphylaxis if that occurs. Avoid codeine/opiates and other meds that directly activate mast cells. Talk with a specialist for more info. ...Read more