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Sun, Feb 10 8:24am · Mast Cell Activation in Blood Cancers & Disorders

Most doctors say the labs are normal because they aren’t actually taking the Right labs. Some then assume it is anxiety. And some of the chemicals mast cells control in our bodies do cause anxiety and or depression as well as hundreds of other chemicals that effect various systems all over our bodies, so it’s understandable that doctors would be confused.

Did they test your prostaglandin levels? Most doctors dont. They need to take labs both when you are at your least symptomatic (for a baseline) and within one to four hours after a reaction. Tests they should order include prostaglandins (pgd2 and pfd2 I believe) as well as tryptase(which is often the only one most doctors test for but that is incorrect), N METHYL hystamine levels and whether your symptoms improve when treated. Some of these tests need to be kept chilled during storage, transport and delivery including the 24 hour urine or a preservative can be placed in the urinalysis collection jugs before use. It can also be helpful to know your leukotirine levels, even tho to isn’t a diagnostic criteria for any mast cell disorders, because if it isn’t high certain medications might help you more such as Singulair/montuklast or Zyflo/Zileuton ER.

Caution when trying new foods and treatment, it’s best to change one thing at a time. It helps to determine what our triggers are and the best Advice I was given when I first was seeking diagnosis, was to keep a symptom and trigger journal. I like the app called “MySymptoms” for that because it allows you to print your tracking or graphs of your symptoms to share with doctors.

Treatment includes identifying and avoiding triggers, certain medication, and treatment of symptoms. Improving on Benadryl, an h1 blocker, fulfills one of the criteria of diagnosis. 1st tier h1 and h2 blocking medications would include things like Allegra, Zyrtec or the like, and Zantac or Pepcid. Many also find Atarax or Hydroxyzine helpful, and Benadryl, an epi Injector and steroids are common rescue medications. Most also are put on singulair or it’s generic or something similar like Zyflo. Some find the shot called xolair useful, although a side effect of xolair can Be anaphylaxis, most mcas patients do well on it.

Many of us react to excipients like preservatives or fillers in the over the counter versions, but respond well to the pure ingredients, and some of us react even to certain medications in their pure form. So it’s been best to try one at a time, and always have your rescue medication so on hand just in case. Doctors often say a medication is safe or “no one reacts to that” but mast cell patients can react to tiny amounts of their triggers, which can be practically anything. Check out thr blogger mastattck.org for a lot more helpful info like testing and treatment and an emergency protocol and the like. I hope you find answers soon.

Sun, Feb 10 7:58am · Mast Cell Activation in Blood Cancers & Disorders

I hope you found your answers by now since this post isn’t from two years ago! How’s are you doing. Did you know February is mast cell disorder awareness month? I was just told this yesterday. I couldn’t get a diagnosis from my allergist at Mayo in Phoenix because although I fulfill four criteria of the five suggested criterion for diagnosis, he didn’t know how to treat me so refused to diagnose. Which is ridiculous but that’s not how some doctors are, I was having severe allergic reactions including anaphylaxis almost any time I ate, as well as in reaction to heat and since then we have discovered I’m abaphylactic to hand sanitizer and formaldehyde (which is in many perfumes) so I flew to see a doctor who knows more about mast cell activation syndrome and immediately started improving. We have since moved to be closer to family and doctors who can treat me. You may want to be tested for a new genetic variation they have been finding in some of us.

I have the trifecta of mast cell activation syndrome, Ehlers Danlos syndrome type three with some cross over to type one and Postural Orthostatic Tachycardia Sundrome (as well as diabetes, sleep apnea and hashimotos THyroiditis.) So recently my allergist ordered a genetic test for something they are calling Hereditary alpha Tryptasemia Which is a genetic trait they have been finding in some people with symptoms of “the trifecta” people with multiple copies of THis genetic thingy often have slightly raised tryptase as I do, although not high enough to suggest Systemic Mastocytosis, and the symptoms, and may respond well to mast cell treatments, although many HaT patients have many severe or odd reaction symptoms tonmedications or their excipients. The test can be ordered by any doctor from a company called Gene by Gene, but Is payed for out of pocket. It was $126 I believe. I have an appointment to go pick mine up

Aug 21, 2018 · Mast Cell Activation in Blood Cancers & Disorders

Depending on which area was biopsies and what the biopsies said you may have one of several types of mastocytosis and I highly recommend you join the mastocytosis Society on inspire no matter which form of mastocytosis was found. You can find them at tmsforacure.org and their inspire group is very helpful as well

Aug 21, 2018 · Mast Cell Activation in Blood Cancers & Disorders

I haven’t heard of any vaccinations for mast cell disorders. Is this something brand new that Mayo is trying?

Or maybe Did your doctor mean Xolair? It’s a shot I am seeing used more and more often. It has its own risks and side effects, but for those it works for it seems worth it. Insurance can cover xolair, or one of the others in the same class or medication, even Medicare if your doctor prescribes it correctly. S/he may not know how to do so. If he was recommending one of this class of drugs insurance only covers it currently for chronic urticaria or asthma patients, if you have certain test results. So if you have chronic hives or (I think) high leukotirines causing asthma like symptoms, it may be doable! Worth looking into if you haven’t found other treatments helpful.

There also are other treatments, many of which I mentioned in my reply above.

Best wishes on finding your best health within this weird and awful disorder!

Aug 21, 2018 · Mast Cell Activation in Blood Cancers & Disorders

Finding what helps people with mast cell disorders either with mastocytosis or mcas or the newly discovered familial Tryptasemia or Hereditary Alpha Tryptasemia Syndrome, can take a lot of time and trial and error because mast cells release or control chemicals that can cause hundreds of symptoms. And because, as One mastocytosis patient told me, we are each like our own portable chemistry set.

For me the things that helped improve my quality of life most were eliminating triggers, staying hydrated, and finding a daily antihistamines (h1/h2 inhibitor combo) that I could tolerate and help, a leukotirine inhibitor, Which is like Singulair or Zyflo or One other I’ve never tried, and a mast cell calling medication which for me means Ketotifin tho some use Gastrochrom or some version of it.

Gradually raising the dose of Ketotifin till I was at a good for me level (most people don’t see improvement on it till they reach the right dosage for them which for me is 10mg three times a day) it has a 12 house half life so most people take it twice a day, but some of us find more improvement with three times a day. and most I’ve spoken with seem to find improvement with 2 to 6 mg doses.

For me staying hydrated has been elusive. I have reacted to the oral rehydration drinks I have tried. Next on my list is somethint called Nuun if I can find some without citrus. Currently I recieve iv hydration as needed.

I found and eliminated triggers to the best of my ability by keeping a symptom and possible trigger log (I use the app called “mysymptoms” available on both Apple and Android last I checked, and there’s are others like it.

Aug 8, 2018 · Mast Cell Activation in Blood Cancers & Disorders

Unfortunately a lot of the specialists are being overwhelmed by patients who think they have mast cell disorder, many of whom may. This is part of what is making them set strict and often seemingly unreasonable limitations. Have you checked out Facebook groups for mast cell activation many patients are willing to message each other there or on insight with recommendations what to do next. Doctor Afrin switched to conscierge so he’s only out of pocket and thus out of the price range of many. Mayo does have a mast cell clinic but getting in can be tricky and they currently seem to be focused primarily on mastocytosis

Aug 8, 2018 · Mast Cell Activation in Blood Cancers & Disorders

You might find more help by checking into the mast cell disorder groups and discussions on the insight webpage. Or ask the mastocytosis society at tmsforacure.org

Aug 8, 2018 · Mast Cell Activation in Blood Cancers & Disorders

I would definitely take that to your doctor asking what it means. Also with your medical history as listed I would look into hereditary alpha Tryptasemia testing. It’s new and thus currently only available out of pocket, but any doctor can order it and I beleive it’s around $160 out of pocket. It’s a new genetic test for a disorder they recently named and it includes a cluster of disorders such as Eds, pots and mast cell disorder or severe allergic reactions