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...
Two new trials for those with MG. Clinical trial means trying out a new treatment to see if it is safe and effective.
Rituximab: The purpose of the study is to find out the effect and safety of a new use of the drug rituximab in myasthenia gravis (MG) patients who are on prednisone.
https://www.neuronext.org/nn103-rituximab-mg
Eculizumab: Safety and Efficacy of Eculizumab in Refractory Generalized Myasthenia Gravis
https://clinicaltrials.gov/ct2/show/NCT01997229
These notices came to me by email because I have signed up for the MG registry at http://mgregistry.org/
Rituximab: The purpose of the study is to find out the effect and safety of a new use of the drug rituximab in myasthenia gravis (MG) patients who are on prednisone.
https://www.neuronext.org/nn103-rituximab-mg
Eculizumab: Safety and Efficacy of Eculizumab in Refractory Generalized Myasthenia Gravis
https://clinicaltrials.gov/ct2/show/NCT01997229
These notices came to me by email because I have signed up for the MG registry at http://mgregistry.org/
I'm pretty sure we have several refractory myasthenics that post here.
To me, "clinical trials" means the decision makers are still aware that we exist.
That gives me a little comfort. Thx!
The side effect can kill you.
I'm new to this group. I tried the Rituximab in August 2013 after being released from the hospital. I've only had to take Mestinon maybe 7 times since 2013 and off and on prednisone since 2013 not going over 10 mg. Needless to say, I been doing great. I look at it this way, everything has a side effect. If we drink too much water it can hurt us, and that's water. So I learned to trust God that I will be okay and not allow fear=FALSE EVIDENCE APPEARING REAL to over take me, but for me to conquer fear!
Peace and Blessings