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...

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limpnoodle 10/10/2013

I went to the neurospecialist today and he ordered rituxan since I haven't been able to get my symptoms under control with Dap, mestinon and plasmapheresis. Just have to see if insurance will approve. He told me that he has had good results with most of his mg patients. And it has not been entirely ruled out that I do not have seronegative mg along with Lems. My symptoms are entirely in line with mg, with some Lems thrown in for good measure. That is why two different neuro's were convinced I had mg even though all my tests were negative.
He is also recommending a thymectomy for long term improvement and the rituxan for immediate help. I am just blown away that I have gone so long with so very little help and suddenly there is treatment coming from every direction.
Down side... He also ordered a spinal tap. :(

Barbel 10/10/2013

Hopefully, the worst is over for you. We will hope for the best. Enjoy your day. HUG Barbel

newmugg 10/11/2013

I don't have LEMS but I did have a thymectomy due to thymoma and just had my 2nd round of rituxan.

I had no problem getting rituxan approved in the hospital setting during crisis but it was a whole different ball game outpatient.

We had to prove all other meds didn't work and my insurance still denied it. The final appeal was to the state insurance board. We added more documentation and the State of Tx over turned the insurance companies ruling!

Now it's a wait and see game to see if the rituxan will work for me. (During crisis, it was hard to tell what brought me out since I was getting so many different treatments)

Hope both of these treatments work for you. I know LEMS is harder to treat.

Hugs
Sherry

txkiki53 10/11/2013

I had my first rituxian today. All went good, got multiple pre-Meds. Go again in 2 weeks, I am sero-negative so very happy ins approved! Also for Sherry!!!!

barb4serenity 10/11/2013

I am SO glad to hear that others have used Rituxamab. That is the next step for me. Nothing else has worked in 7 yrs.My insurance company denied my seeing a neuro who specializes in MG at Columbia/Presbyterian Medical Center in NYC. My MD sent medical info indicating 7 yrs of unsuccessful tx and did a peer to peer review with a medical director. Ins kept saying that there were 100's of in network neuros all over who "say" they can treat MG. The NYS INS board was involved to no avail. My doc & I kept saying that JUST ANY neuro does not have the knowledge needed to treat MG. They held their denial. Fortunately, I found a NYC doc who does tx only MG & does research. Now the two docs are working together. I an concerned about getting the Rituxamab approved. I am sero-neg also. Any suggestions on improving my chances of approval will be greatly appreciated. Those of you trying Rituximab, please keep us updated as to how you are doing....any side effects.....Best of luck!

deleted_user 10/13/2013

Rituxinmab works! it put me into complete remission now im dealing with headaches. I also had a thymectomy in 2010 but didnt see much results, but who knowa if the 2 together helps.

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