Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
The first time I took Rituxan, it worked almost immediately. I had two treatments four weeks apart, and got about 75% of my strength back. However, the effect only lasted two and one half to three months.
I had it again a little over a year later and it did not have any discernible effect that time. Long term, though,I'm thinking it has helped with not having to have plasmapheresis as often.
Hope it works well for you. It really helps a lot of people to get back closer to normal.
I've never gotten an infection from catheter use, but all the ins and outs have cause my neck veins to be scarred down so that I only have the one I'm currently using left. Surgeon wants me to consider an A/V fistula, but I'm hesitant because my veins are so weak and flaccid.
I had a vortex implanted port in that one remaining vein, which fractured and had to be replaced last Monday. It's been over three weeks since my last treatment, since the catheter failed, so trying to take it really easy till Monday, my next treatment date.
If you find that magic wand, please let us all know. In the meantime, hope your Rituxan keeps you feeling good.
Finally, a different neuro was tired of all the Rituxin, and she put me on Methotrexate. I went 6 months without needing Rituxin! And, I was able to taper my Prednisone from 25mg/day now to 12.5mg, and starting 10mg next week! Methotrexate was the life-saver!! She's hoping l"ll never need Rituxin again, and can get off everything else!
Good luck to you with the Rituxin. It can really work, and sometimes it takes time to build up in your system.
Nan, good to hear your getting good results from methotrexate. How long did it take to see results?
I ask because I also am refractory with LEMS. Does it have any side effects for you?
My brother just started it for psoriatic arthritis.