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Doctor insights on: Mast Cell Disease Treatment

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What r symptoms & best treatment of mast cell disease? I get constant hive reactions to every med I try, freq rashes, wondering if mast is my issue.

What r symptoms & best treatment of mast cell disease? I get constant hive reactions to every med I try, freq rashes, wondering if mast is my issue.

See allergist: First you need a blood test to confirm whether you have a mast cell disorder to start with. If the blood test is positive, then one will have to work up the cause for the mast cell disorder. The usual treatment in high doses of antihistamine but you really need to find out whether your problem is from a mast cell issue or something else. A b/c allergist should be the one you consult. ...Read more

Mast Cell (Definition)

Innate immune cell prevalent in tissue and surrounding small blood vessels. Acts as a source of histamine and other rapid acting mediators of an inflammatory response to tissue infection or damage. Inappropriate activation of mast cells is central to many allergy-related diseases including anaphylaxis. Inappropriate population expansion or activity results in ...Read more


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Are there any cures for mast cell disease?

Usually not: In rare cases where it is due to a leukemia or related illness, curing or managing this works well, and some folks respond to gleevec (imatinib). Otherwise, we're left managing the symptoms, which is usually possible. I have a colleague with mastocytosis under quite good control, and there are support groups in communities and online. Good luck, and stay proactive. ...Read more

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What is mast cell disease and how does it manifest in infants?

What is mast cell disease and how does it manifest in infants?

Brownish lesions on: Mastocytosis is when you have collections of mast cells, usually on the skin. These are brown spots, (1 or many) if you scratch them they turn red and swollen for a while (they form a wheal as histamine is released) Usually harmless, but a systemic form exists, not very common, with lesions in bone and other organs. ...Read more

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I have just been diagnosed with systemic mast cell disease. Where can I learn about it?

I have just been diagnosed with systemic mast cell disease. Where can I learn about it?

Which type?: You have my sympathy. There are at least five different important types. Your first step will be to find out which variant you have, and of course get specialist treatment. There are several ongoing studies in which you may have the opportunity to participate -- this would be to your advantage. Good luck. ...Read more

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Is chronic urticaria a mast cell disease?

Is chronic urticaria a mast cell disease?

Yes.: Mast cells are the source of histamine and other biologically active mediators that trigger hives. ...Read more

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What's chronic urticaria vs mast cell disease?

What's chronic urticaria vs mast cell disease?

Complex problems: There are at least five important systemic mast cell diseases (mastocytosis) and even more causes of chronic urticaria (of which some mastocytosis diseases are only one cause). Often, no cause is ever found for chronic urticaria. A hematologist will probably treat mast cell disease -- perhaps in a research study -- while a dermatologist will manage chronic urticaria. Good luck; stay proactive. ...Read more

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Does the med, xyrem release histamine? What do you suggest for mast cell disease?

Does the med, xyrem release histamine? What do you suggest for mast cell disease?

See below: It is not known exactly how sodium oxybate (xyrem) works, but it is theorized that it works via agonizing the GABA receptor (promoting sedation among other effects). It is not thought to work on histamine. It is recommended that you consult your pcp to evaluate for possible mast cell diseases, if it is concerning you based on symptoms. Hope that answers your question. ...Read more

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My husband was diagnosed with mast cell disease. Can anyone help?

My husband was diagnosed with mast cell disease. Can anyone help?

Need to see a doctor: Your husband need to follow-up with the doctor who made that diagnose. ...Read more

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Help please. Suspect MCAD (Mast Cell Disease) - tryptase and mutliple GI confirmations-possible organ damage. Any DFW hospitals that will admit / help?

Help please. Suspect MCAD (Mast Cell Disease) - tryptase and mutliple GI confirmations-possible organ damage. Any DFW hospitals that will admit / help?

See allergist: Your problem can usually be handled by your allergist and there is nothing more that can be done at a hospital unless you have organ failure. You likely need a bone marrow biopsy by a hematologist as well. I also note that you are not taking any antihistamine at all. ...Read more

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Male 22, doc suspects mast cell disease. I use Zantac (ranitidine) for my acid, can I take ceritrizine OTC myself until I get tested? Is it safe to take both?

Male 22, doc suspects mast cell disease. I use Zantac (ranitidine) for my acid, can I take ceritrizine OTC myself until I get tested? Is it safe to take both?

Mast cell disease: Mast cells disease can cause acid reflux and hives and itching and you can use zantac (ranitidine) and Cetirizine to treat the symptoms. Not sure if your doctor wants to do a skin test, but zyrtec will affect it, so check with your doctor first. If the doctor only wants to do blood tests, you can go ahead and take both, but check with your doctor first. ...Read more

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Ige=5, tryptase=3, histamine release=16% and histamine and ana=negative on blood work, are these normal? An does it clear me for a mast cell disease?

Dificult to say: These results are normal. The low tryptase level makes systemic mastocytosis (one type of mast cell disease) less likely. But, without any information about your clinical history, symptoms, etc., it is hard with only the above data to determine what is going on. Do you have hives or flushing or anaphylaxis, etc? Submit another question describing your symptoms, or talk with your doctor. ...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?

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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Other than antihistamines, and mast cell blockers, what therapies or treatments are available? Pros and cons? What should I make a point of asking?

Other than antihistamines, and mast cell blockers, what therapies or treatments are available? Pros and cons? What should I make a point of asking?

See an Allergist: You really should not try to seek the "best" treatment based on an internet chat room interview. See an allergist for testing and both of you can come up with the best plan of actions (shots, medications, avoidance) recommended. Why risk hurting yourself or blaming a doctor who is simply trying to help you but is doing so blindly through an internet "help" site. ...Read more

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How can you be checked for a mast cell disorder or disease. Like mastcytosis or mcad? Is there a certain test that can verify or rule it out?

Biopsy: Biopsy looking for increased mast cells is the best way. One will also measure tryptase levels and other mediators in the blood. The organ to be biopsied depends on the spectrum of disease. There are some physical signs as well. Would see an allergist or a gastroenterologist who has some knowledge of this disease process. If localized to the skin a dermatologist might be of help. Bone marrow? ...Read more

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Does desloratadine have a mast-cell stabilising effect which can cure an allergy?

Does desloratadine have a mast-cell stabilising effect which can cure an allergy?

Desloratadine: Is an antihistamine that blocks a histamine receptor but does not stabilize the mast cells, there is no medication that can cure allergies, your best potential for cure will be from allergen immunotherapy. If you have an allergist around, ask them aout it. ...Read more

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What is nonclonal mast cell activation disorder?

Newly characterized: It's a mimic for disorders caused by a neoplastic clone of mast cells. This is hematology subspecialist stuff and I would much rather have this than one of the clonal forms. Http://www. Ncbi. Nlm. Nih. Gov/pubmed/23212667. ...Read more

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What does a mast cell activation disorder rash look like?

What does a mast cell activation disorder rash look like?

Rash: It can vary from hives to different types of rashes that can easily be diagnosed with a biopsy. ...Read more

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Could mast cell activation disorder cause a virus to trigger severe sinus symptoms and reactive airways?

Could mast cell activation disorder cause a virus to trigger severe sinus symptoms and reactive airways?

Mast cell disorders: A variety of “triggers” may induce a mast cell response. These include drug abuse, alcohol drinking, preservatives, stress, sunlight, environmental toxins, bacteria/fungi/mold, artificial colors or flavorings, heat/cold, and presumably viral infection. Minimizing your exposure to these triggers may help redcuce your risk of triggering mast cell activation. ...Read more

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Can multiple foods intolerance developed within months in a teen girl with celiac be a sign of mast cell activation disorder?

Can multiple foods intolerance developed within months in a teen girl with celiac be a sign of mast cell activation disorder?

Wouldn't assume so: There are many things that gluten reactivity predisposed someone to that interfere with digestion. The primary gut injury & episodic unknown exposures often lead to cross reactivity/intolerance to non gluten foods. Things like chocolate, cow milk, egg or corn can trigger immune related responses. Food dyes like #40 red & others can also trigger symptoms. Detailed testing can identify many. (Cyrex labs) ...Read more

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I am on 20mg rabeprazole and have been prescription 400mg x2 daily cimetidine for mast cell activation disorder - are they safe to take together?

I am on 20mg rabeprazole and have been prescription 400mg x2 daily cimetidine for mast cell activation disorder - are they safe to take together?

Yes, but...: ...You may be able to maximize your dose of Cimetidine alone so that rabeprazole can be discontinued. Talk this over with your prescribing physician, ; clarify with him/her the duration of treatment that's planned. ...Read more

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Pillcam = many small + large bowel AVMs. Yet 2 colonoscopies earlier that year showed none. Could sudden lesions b related to mast cell disorder?

Pillcam = many small + large bowel AVMs. Yet 2 colonoscopies earlier that year showed none. Could sudden lesions b related to mast cell disorder?

AVM's in colon: Intestinal arteriovenous malformations are possible to see with a camera, and may have been missed at colonoscopy, which looks mainly for masses not flat lesions such as AVM's. Such can appear quickly, but usually only secondary to bowel inflammatory episodes. It depends on whether you were symptomatic when you had either the camera or the colonoscopies ...Read more

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Is Zantac (ranitidine) and cetirizine safe to take long term. I have mast cell activation disorder so use these for symptom relief and prevention?

Yes: Mast cell activation disorder can be a difficult disorder to treat. Thankfully, both Cetirizine and zantac (ranitidine) have very favorable side effect profiles so they can be used long term with minimal risk. ...Read more

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I have mast cell activation disorder (idiopathic) and am going crazy with skin crawling. I have been on Ketotifan twice daily as well as reactine twice daily. Any advice on further measures? I was considering Benadryl during this awful episode. I tried X

I have mast cell activation disorder (idiopathic) and am going crazy with skin crawling. I have been on Ketotifan twice daily as well as reactine twice daily. Any advice on further measures? I was considering Benadryl during this awful episode. I tried X

MCAD: You can try Benadryl, (diphenhydramine) but don't overdose, mind you, you are on Reactine (cetirizine) which might cause sedation as well, it isn't totally non sedating, just less sedating. Other drugs as H2 blockers like ranitidine can help too, as well prescription anti-leukotreines like montelukast or zafirlukast can be of help. You need to follow up closely with your Allergist/Immunologist, good luck ...Read more

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Natural alternative for Diamox or topamax? I've dysautonomia (hyperPOTS) and mast cell activation disorder with connective tissues disorder. I'm allergic to gluten which is part of diamox. I have an intracranial pressure and breathing difficulty, when lay

Natural alternative for Diamox or topamax? I've dysautonomia (hyperPOTS) and mast cell activation disorder with connective tissues disorder. I'm allergic to gluten which is part of diamox. I have an intracranial pressure and breathing difficulty, when lay

Comprehensive exam: This question requires either allergic medical or rheumatology comprehensive evaluation and examination. If you in fact, have increased intracranial pressure: please go directly to your local ER. I have seen you post on POTS submitted multiple times and answered by many physicians. Please get examined or hospitalized to resolve your medical issues. ...Read more

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Could mast cell disorder cause tachycardia no hypertension, chronic sinus problems, brain fog, sweating, fatigue, shortness of breath very high ige?

Could mast cell disorder cause tachycardia no hypertension, chronic sinus problems, brain fog, sweating, fatigue, shortness of breath very high ige?

Most common symptoms: Fatigue
skin lesions (urticaria pigmentosa) and itching
abdominal discomfort
nausea and vomiting
diarrhea
food and drug intolerance
olfactive intolerance
infections (bronchitis, rhinitis, and conjunctivitis)
ear/nose/throat inflammation
anaphylaxis (shock from allergic or immune causes)
episodes of very low blood pressure (including shock) and faintness. ...Read more

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Can toothache trigger mast cell activation?

Can toothache trigger mast cell activation?

Allergic reaction: Mast cells are activated during allergic reactions and in some autoimmune diseases. A toothache is a infection and not an allergic reaction so here would be few mast cells. ...Read more