Thank you so much for responding!
The studies on Rituximab have been so small that it isn't even listed on cochrane.org, a very respected organization that follows trials for all illnesses, most likely because there's so few of us. It's a very rare disease. Out of all of the CIDP-like disorders, only 5% have Anti MAG Antibodies. Of that 5%, 90% are male and 10% are female. So basically there's no money in it for the drug company to our detriment.
I believe positivily in sharing our experiences. Maybe we can help each other 😊
I'd like to start a separate chat for people with Anti MAG Antibodies. My first post wasn't worded so well as to attract the attention I'd like to see. May a new post with a larger title?
I believe the Anti MAG Antibodies started 20 years ago in 2 toes.
However, my diagnosis came late last September.
Since then, there have been countless tests, blood work ups, X-rays, CT scans, biopsies, Hematologists, Oncologists, Neurologists, and more. They're also watching for lymphoma, a cancer that can be associated with this disease. I had my first 4 Rituximab infusions in November and December with a break for my first COVID-19 infection. I've seen no progress but, as you, the doctors have said it may take as many as 6-10 months to see a result. Meanwhile, I keep masked for my immuno-compromised body.
Since muscle and strength loss are a large part of the progression of this disease, I've decided to keep working on walking, strength training with barbells and aquatic exercise. I have been loving the aquatic exercise because, I feel so safe in the water. I can almost follow the young instructors step of step, something I can't do on land. I can balance on one foot for over 1/2 minute! However, I'm missing the boost of energy I've had in the past after exercising for a few weeks. This may be part of the disease. I'm not going to let it stop me, though.
Yes, I too have muscle and strength loss, with fatigue. And I also walk daily 20-30 minutes, lift weights 3x/wk, and do rehabilation balance exercises I learned the other 3 days. Have been taking Sundays as rest day. Have found that exercise bike in place of walking doesn't give me the leg/general fatigue that walking does---but rather do walking to be outside. Sounds like you have a good exercise plan and positive attitude/approach. Will keep you posted in future on whether I see results after my upcoming 4 bi-mthly Rituximab infusions.