Doctor insights on:
Mast Cell Disease Treatment
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
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
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
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
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
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
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
Need to see a doctor: Your husband need to follow-up with the doctor who made that diagnose. ...Read more
Help please. Suspect MCAD (Mast Cell Disease) - tryptase and mutliple GI confirmations-possible organ damage. Any DFW hospitals that will admit / help?
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
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
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
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
Is there any known/suspected relationship between. Undifferentiated connective tissue disease and mast cell activation syndrome?
Unaware: I am not aware of such a connection ...Read more
Is there any known/suspected relationship between. Undifferentiated connective tissue disease and mast cell activation syndrome? How is uctd dx?
UCTD: Good question. Not sure. Sorry can't answer that one comfortably. ...Read more
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
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
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
I am on 20mg rabeprazole and have been prescription 400mg x2 daily cimetidine for mast cell activation disorder - are they safe to take together?
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
Is Zantac (ranitidine) and cetirizine safe to take long term. I have mast cell activation disorder so use these for symptom relief and prevention?
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
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
Could mast cell disorder cause tachycardia no hypertension, chronic sinus problems, brain fog, sweating, fatigue, shortness of breath very high ige?
Most common symptoms:
skin lesions (urticaria pigmentosa) and itching
nausea and vomiting
food and drug intolerance
infections (bronchitis, rhinitis, and conjunctivitis)
anaphylaxis (shock from allergic or immune causes)
episodes of very low blood pressure (including shock) and faintness. ...Read more