Mast Cell Activation

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!

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.

I live in St Cloud and have suffered from multiple health conditions over the last several years. At many times I was overmedicated which just exasperated my problems. Trying to get anyone to listen to me was almost impossible. I have been misdiagnosed more times than I can count. I can pinpoint to one time where I became very ill, high fever, severely lethargic, sore throat, headache. I couldnt get out of bed for 4 days and didnt have access to medical care. Ive never been the same. I started having severe gi issues, losing 65 lbs in 3 months. So severely nauseous I couldnt eat and had severe diarrhea almost daily and have had for the last 18 years. I was diagnosed with ibs but have had no resolution. Due to some life events i became severely depressed. I was put on antidepressants which rather than providing relief they started creating a new set of issues. The more I said they werent helping and the more side effects I was having, drs kept adding new medications. At one time i was on over 30 medications. Last summer I was diagnosed with mast cell. Allergy tests came back normal, but biopsies were done and confirmed mast cell. Sometimes I feel like im the one doing all the diagnosing. I have had to research and push for every test ive had. In December of 2017, i figured out that side effects to my depression and anxiety meds were what was causing the severity of my mental health symptoms, to the point of almost ending my life multiple times. Also, discovering multiple food allergies and medication allergies and sensitivities.
They seem to be growing in numbers. I have malabsorption issues and vitamin deficiencies as well. I have reduced my med list as much as possible. Ive even tried medications for mast cell but they only cause more problems. I am currently fighting three infections in my body that ive had since June. No meds are working, only creating more problems. I will be seeing an infectious disease specialist to help me. Im hoping i can gather some information from him about what to do in the future as i struggle with infections, symptoms, allergies and ever-growing side effects. This is definitely a frustrating disorder and can definitely contribute to feelings of hopelessness. I would love to hear from others with mast cell. Side note: Dr Afrin has moved from the U of M to Armonk, NY. His clinic does not accept insurance and is strictly out of pocket.
Best of luck to anyone struggling with this disorder.

I am moving to the Twin Cities shortly and am hoping to find a doctor at the Mayo. Any suggestions are appreciated for Mayo doctors that specialize in mast cell! Thanks!

Ah, good to hear such kind and hopeful words. I need that hope as do many. Any and all information on MCD is much appreciated.

@jennybay that is really horrible that there is something that could probably help you but is beyond reach, financially. Maybe they won’t pay because it’s effectiveness is not yet proven. If so maybe it will eventually be covered.
The pharma companies are so greedy. Young people who want to make large incomes typically gravitate toward pharma, knowing the opportunity for big bucks is there. A young woman we know works in that field and is easily a millionaire at this point, with many perks.
JK

Finally someone that understands my plight. Yes, this disease is a nightmare and when I have an attack, my face almost gets disfigured due to extreme swelling and allergy type breakout. This in top of extreme itch that makes me want to use a knife and peel my skin off. One of my doctors states there is now a vaccination for mast cell, with conditions. First off you must have experienced this under Dr care for at l ast one year before being considered for the vaccine. He stated currently it is basically out of financial reach for those who need it (such as me) because it’s over four thousand a month, one vaccine and must be continued for around ten-twelve months in order to become effective. I failed to write down the name as he cost was enough to know I’ll never be getting it. Oh, and insurance as I am on Medicare, won’t pay any portion. This may change in the future however I shall not see this in my lifetime more than sure.

Hi Patrick - I am from Duluth! I have been having symptoms of mast cell disease, like anaphylactic reaction, what I thought were food allergies, digestive problems, weakness, fatigue, heat rashes/sensitivity, body rashes, etc. for years with no answers as to why.
After I had my last episode, I went into my PCP and thought I needed to get allergy testing done. I was referred to Dr. Alaaddin Kandeel in the Essentia Health allergy department. After I explained my symptoms and different reactions, Dr. Kandeel told me about Mast Cell Disease. He took his time to explain the disease to me. It was the first appointment I’ve had where I felt the doctor really listened to what I had to say and answer every question I had. He did not make me feel rushed at all. He had blood tests done for me that day. He then had me do the 24 hour urine test, and I am scheduled for a bone marrow biopsy. I highly recommend Dr. Kandeel at Essentia Health. Take care!

Hello @smbryce1,

I sincerely appreciate your follow-up of posts in the Mast Cell Activation group on Connect – welcome!
You mentioned, "...after I posted this it showed me lots of replies," and as moderator of this group (Skin Health), I thought I'd also clarify that it's an active conversation, especially with the shared experiences and valuable responses offered by other Connect members in this discussion. I also hope that @danmlee has found good resources and some relief for coping with MCA.

The benefit of sharing in the community is that you can receive information and support from a knowledgeable group of people; it is awesome that you have chosen to be a participating member of the Connect community; would you be comfortable in sharing more about your treatment and what has helped you led a better quality of life?

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