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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Worsening symptoms with MCAS meds??

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I've been diagnosed with MCAS and am exploring options. Oddly, 10 years ago I'd been on Allegra, cromolyn and ketotifen and hated them all.

95% of my symptoms went away for several years after removing food allergens, doing LDA, and upping my nutrients, particularly methylation support.

I only seem to be reacting now after IVIG seems to have flared it up.

When I asked my naturopath about it, he said that he'd recognized it and had me on such a robust methylation program and big doses of vitamin C. And he gave me boswellia and curcumin, including a curcumin IV which normalized me after a week of IVIG provoked symptoms.

I see in the attached that there are also quercetin, curcumin, vitamin C, and other natural substances.

I don't know what all the answers are here. I still have more subtle symptoms and believe I need a more comprehensive approach. But I'm finding the list of MCAS drugs I'm researching are a minefield of allergens requiring expensive compounding, while the supplements are cheaper.

It seems that understanding what conditions are triggering the mast cells in the first place and minimizing them would be useful.

Has anyone looked at an entirely natural approach or at least one with a minimum of drugs?
 

Attachments

  • Afrin Drugs for MCAS.pdf
    891 KB · Views: 21

bspg

Plant Queen
Messages
547
Location
USA
@Thinktank FWIW, I'm also on ketotifen and have had almost no issues with it. I started low (.5mg) and increased my dose very slowly over a month or so (up to 2mg twice daily). I was tired and a little dizzy on first day of each increase but other than that I was fine.