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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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Rituximab or Gleevec? MCAS/CFS/immunodeficiency

I did before, a few years agо, when I had just CFS and viral infections. It didn’t work to me. And right now I can’t try it one more time, because all protein drugs are very aggressive for my body, and I can’t tolarete it


Senior Member
I know that probably sounds crazy, but it reality it doesnt work so bad. Because of course it doesn’t suggest that people will use it at home, they are not crazy to use seriouse medicine by own. So they are just purchase a medicine (of course after recommendation or prescription from doctor) and after bring it to clinic/hospital for a treatment with a doctor, who prescribe it. But in pharmacy you can buy it even without a prescription.

Thank you for explaining how it works in your country and it is totally different than in the US where you would need both a doctor to prescribe and insurance approval. In spite of all the different bureaucracy, I hope you are able to get the treatment that you need in the future.
For my personal interest: How often did you get IVIG at which dose? How were the costs?
I don’t remember а doses exactly. But it was a small doses. I didn’t see any improves for me, just a side effects like inflammation and a thick blood. In Russia you can buy a different IVIG, for example from Austria 100mg for 50ml about 350$.


Senior Member
I had years ago really low vitamin d levels (still 4ng) because off beeing bedridden.
Nowadays my Vitamin D levels are fine (50ng), but increasing vitamin D levels did not help my MCAS.
I had swollen Lymphs, gut, stomach, bladder, prostata, skin inflammation from MCAS/CFS, but
even High Vitamin D doses didnt fix anything, the bloodwork still continued to show high TGF-ß, Leukotriene, Th2 Shift and so on.
The only benefits were increased CA + P levels in the bloodwork.
(CA + P uptake is regulated by Parathormone <-> Vitamin D)

Do you know the Afrin MCAS medication overview?
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