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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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Interesting that she seems to echo Dr. Enlander's concerns about the potential toxicity of Rituximab.
i think that the lack of knowledge and worry that chemotherapy means 'hard drug' or toxic drug is at play here. Targeted therapy that is Rituximab is a beautiful thing because it doesn't affect non-targeted cells, unlike other chemotherapies for cancer which affects fast reproducting cells and give patients all kinds of symptoms and toxicities.I find it strange rather than interesting.
The problem is if a doctor comments on something that they don't know much about then I begin to question everything they say.
Remember Fluge and Mella didn't report any serious side effects if their trials, so where is all this safety concern coming from.
Lastly, it is my opinion that a life-changing disease which strips patients of their dignity, of their work and themselves deserve appropriate treatments, diagnostics research that commensurate burden of disease and access to clinical trial using drugs that has the necessary power to knock the disease down. I feel strongly about that. It may not be everyone's cup of tea but it is mine.
Oh, the irony...why is there such concern for ME?
My understanding is that most of the side effects, in most cases, of Rituximab, are associations or about Rituximab in combination with other drugs. ME patients may be on other drugs but they are different to cancer patients for the most part. Its not clear what impact Rituximab has that is due to the drug by itself. I guess the biggest risk is if the patient gets a life threatening infection while their adaptive immune system is down.Yes even if rtx was as bad as some people seem to be making out, do they not realise how bad this disease is ? This drug is approved for cancer and RA so why is there such concern for ME?
How do you rule out chronic lyme?
- she does thorough assessment.
- chronic Lyme have deeper neurological component, joint swelling, tingling and numbness.
Yes, again I have joint pain/swelling, hair loss, ulcers in mouth and nose and a positive ANA - Lupus was ruled out.Can one have autoimmune disease and still have Me/cfs and how to differentiate?
- tough question.
- Joint pain/swelling, other symptoms like cold sore hair loss, Raynauds, RF, lupus ANA would differentiate.
- had only 1 person with IgM+