Here we go again. . .
It's all coming back to me. The war on this myopathy* starts with PILLS. Not very exciting, but there you have it.
THE ARSENAL
Methotrexate: An immunosuppressive agent which knocks out overactive immune systems like mine. Takes a couple of months to get going.
Prednisone: Also discourages the overeager immune response but jumps into action more quickly than methotrexate.
Pantoprazole: Keeps the prednisone from tearing up my stomach.
Sulfamethoxazole & trimethoprim: This antibiotic combo helps prevent infections while the immune system is being suppressed.
Probiotics: To counter the effects of the antibiotics. (But also, look how great they are!)
Folic acid: An inexpensive over-the-counter supplement but it's sorely needed since methotrexate keeps the body from being able to use folate
Calcium and vitamin D: To try to boost calcium levels since prednisone inhibits the absorption of calcium in the body.**
THE PLAN
Next up, if needed: Intravenous immunoglobulin (IVIG) and rituximab. Stay tuned!
* “Myopathy” means muscle disease in Greek (myo- “muscle” + pathos -pathy “suffering”)
**Related: I'm now taking alendronate to try to restore some of the bone mass lost in part due to my last round of long-term prednisone in 2020. Thanks a lot, prednisone.

I'm curious now about the folate connection... is there any relation to the MTHFR gene thang? I believe I have this, and there's recent research pointing to it being an underlying factor to my EDS (and so many other things!).
ReplyDeleteI'm taking methylated Bs now versus folic acid and trying to avoid foods fortified with folic acid.
Interesting. I really don’t know much about it—so many things to investigate!
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