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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Help with MCAS

Messages
23
I started getting sick in 2010 didn't know why by 2013 was going into full blown anaphylaxis had chronic fatigue and was having diarrhea all the time i reacted to everything i ate face felt swollen all the time and stomach hurt around the clock full body itching flushing etc... After getting very sick my family discovered black mold behind the walls we all got sick but i was the worst. We ended up getting rid of everything we owned including are cars and moved into a brand new home no one had ever lived in. By that time I wasn't able to eat food anymore I live on pure formula VIVONEX, i was diagnosed with MCAS that was was believed to be triggered by the mold.

I've been on formula for over 4 years, and take all the typical MCAS meds, 40 MG a day of zyrtec, 600 Mg Zantac, 100 - 150 mg of benadryl, 2000 mg quercitin, 10 mg of Singulair, 2 mg of lorazepam, I've tried Ketotifen and my body won't tolerate it. I also take once a day cholstymine and activated charcoal.

But i'm at a point where i'm on formula and on meds and i'm not getting any better im able to keep my body calm but is there anything else that can help with treatment.

I don't really know where else to go, i live in southren california are there any doctors that prescribe the cancer drugs like Imatinib or Masitinib to MCAS patients.

I'm at the point I don't know what else to do besides the cancer drugs, IVIG therapy and not sure after that.

I also have strong MCS, and Get extremely sick around EMF I can't even use my laptop without getting sick.
 

Gingergrrl

Senior Member
Messages
16,171
@AlpineX2 Please send me a PM if I can be of further help and our stories are incredibly similar. I also developed severe MCAS in 2015, which progressed to anaphylaxis to all food, as a consequence of living with toxic black mold. We also moved and got rid of all of our belongings (but kept our cars). I was finally hospitalized and put on IV Benadryl (at that time) but it was only a band-aid and caused other problems.

I am also in So. CA and have an amazing MCAS specialist. He is not taking new patients but maybe he would be willing to make an exception? He put me on two meds that immediately allowed me to tolerate some foods. They were Ketotefin (which you said you don't tolerate) and Atarax (as my rescue med). In mid 2016, I began IVIG and this put my MCAS into remission and it has never returned. I cannot explain the mechanism, only that it happened, and my MCAS doctor said it is common and many of his patients went into remission from IVIG.

In 2015 and 2016 I was taking a ridiculous amount of MCAS meds, 30 minutes before eating, just to tolerate 4-5 foods and to stop the ANA reactions. Although, I never tried Gleevec or any of the chemo meds for MCAS. I later did Rituximab which put the other pieces of my illness into remission (LEMS and Autoimmune POTS) but the MCAS went into remission with IVIG alone, one year prior to starting Rituximab.

At present, I am tapering off Cortef b/c no longer needed to help control the allergic reactions. I still take one Zytrec, 1/2 Pepcid, one Ketotefin (2 mg), and one Quercetin (500 mg) per day but realized that I did not take them at all several days last week and never had any problems, including eating in restaurants. I no longer have any issues with food or smells/odors but I continue to avoid FD&C food dyes, especially Yellow #5, b/c it was my very worst allergic reaction. It is possible that I may tolerate them now but I have not been brave enough to test it out yet.

Unlike you, I never had any issues with EMF or using computer, cell phone, etc. My other major symptoms were POTS, muscle weakness, and shortness of breath which led to me using a wheelchair for 3.5 years. These are also now in remission for about 5 months from the combination of IVIG and Rituximab.
 

wigglethemouse

Senior Member
Messages
776
You may also want to consider trying Cromolyn (Gastrocrom) if your insurance will cover it. My understanding is that 99% stays in the digestive system and really helps calm that system down. As very little enters the bloodstream it is usually well tolerated.
 
Messages
23
You may also want to consider trying Cromolyn (Gastrocrom) if your insurance will cover it. My understanding is that 99% stays in the digestive system and really helps calm that system down. As very little enters the bloodstream it is usually well tolerated.

I’ve tried it I react poorly to it and it causes dierrah
 
Messages
22
The above article discusses Theoharides‘ investigation of intranasel administration of flavonoids. Interestingly, Cromolyn administered orally (Gastrocrom) did nothing for me. However, Nasel Crom, which is the same activate ingredient administered intranasally solved my brain fog/head pressure issues within a few days. As in a 20 year on and off problem has been completely eradicated.
 

Gingergrrl

Senior Member
Messages
16,171
I’ve tried it I react poorly to it and it causes dierrah

I also did not do well with Gastrochrom (or any form of Cromolyn) back in 2015 even though I know it is helpful for many people. I also just replied to your PM.
 

JasonPerth

Senior Member
Messages
124
Hi everyone, just came across this, i finally got my hands on some Nasal Crom to try. What dosage each nose per day should i do?
I found a paper for McAs treatment and i recall it saying start with 1/2 and beware of a reaction to plastics?
But on the bottle it says use 3-4 times per day per nostril!?!
What has worked for you?