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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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Here's a thread of interest along those lines;
https://www.healthrising.org/forums...likely-mast-cell-and-glial-inflammation.4701/
Look into Tranilast too, it's another mast cell stabilizer med that's reasonably easy to access through compounding pharmacies.
Sorry, not something I know the answer to.Does tranilast cause weight gain?
I wanted to post here for anyone looking into ibudilast. I ordered some from Japan and it has no effect on me at all and no side effects. I might as well have took a sugar pill. It was definitely legitimate, so my conclusion is that this medication is completely ineffective in treating ME and reducing neuro-inflammation.
As far as MCAS goes, I take montelukast and find it effective. I have also tried ketotifen which was ineffective in my case and gave me headaches. My partner who has ME and MCAS has had the same experience as me with regards to these three medications,
@ebethc did you havr tests to confirm mcas or do you have definite mast cell/allergy type symptoms?