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...
Last year I was diagnosed with MG. After four months of getting weaker and weaker I was put on Mestinon and prednisone. Before I went on the meds, I had about 7-9 days of double vision that went away on its own. After I started the medication I had immediate results and felt great. I never went over 30 mg of pred and stopped the Mestinon completly. As time went on I tapered down to 2.5 mg and still felt great. About 6 weeks ago, I stopped the prednisone completely and then developed this double vision 5 weeks later; no weakness. I went to my neuro and he started me back on the prednisone and Mestinon and told me he would like to try Cellcept in a month. So far after almost 2 weeks of the prednisone (taking 30 mg a day now), my vision hasn't changed. I am wearing an eye patch to help straighten things out. This is very disturbing to me, as I was doing so well.
What I don't understand and I am going to have to ask the neuro when I see him again, how could I be down to 2.5 mg of pred a day and not have any symptoms on such a low dose and then this??? I am just hoping it will resolve with time.
The most annoying thing about MG treatment is the time delay for most changes in medicine (other than Mestinon, IVIG and PLEX) to show up in our symptoms.
A high dose of prednisone (say 50-100mg/day) can stop the immune system from making the bad antibodies, but they are still in our blood and have to be given time to disappear and then the receptors (that are both blocked and destroyed) have to grow back.
I never quite figured out the time delay for this to happen, but I think it must be at least weeks and maybe more like months. For me, my initial treatment took 3 months to get rid of the double vision using prednisone 20, 30, 40, 50, 60 from starting dose to MG symptoms and double vision gone. Mestinon never got rid of the double vision on its own.
I think maybe the ideal treatment for rapid response to MG is a combination of prednisone at high doses (50 mg or so), and IVIG or PLEX. The prednisone stops the production of the bad antibodies, and PLEX filters them out, and IVIG does something magic too to let receptors regenerate rapidly. Prednisone alone seems to be much slower to show changes for the better or worse.
As Imuran and Cellcept are much slower to take effect, mostly they are added to prednisone and then prednisone gradually tapered off.
Your drop to 0 prednisone showed you are not in remission, and will need ongoing treatment. You learned something with this drop, and so have to figure out an ongoing long-term treatment.
Double vision was, to me, a really difficult condition to live with in the 3 months I had it early in my treatment. I tried patching one eye, and taping one eye glass lens, and finally figured that I could close one eye as needed sort of without it bothering me. When I drove, I did this, and coming to an intersection, or other place where I wanted better than one -eye vision, tilted my head far back, looking out of the bottom of my eyes and the double vision went away -- appears that in their "bottom" position, the muscles hold them in alignment better.
The goal of treatment of MG is to suppress the immune system enough to get rid of the worst symptoms, but keep some immune system function so we can live without other problems. Mestinon added to prednisone lets us keep more of the immune system and still keep MG symptoms minimal. I think the goal of prednisone therapy is to bring symptoms down to the level that, with added mestinon, we do OK. Taking prednisone enough to stop mestinon may be too much immune system suppression
MG treatment is really an ongoing balancing act -- minimum medicine needed to keep us functional, beginning with prednisone and generally gradually switching to something that has less side effects.
Good Luck Happy Holidays. Hope 2017 gets you back to seeing normally again.
I laughed to myself regarding Rhanson's description of driving with double vision. It fits me to a Tee. The hardest part of patching an eye is that you lose your depth perception. Also, be careful not to attempt to drive at night, since your eyes don't seem to adjust to light changes quickly. Your pupils can close up when you see headlights, and not open up quickly afterwards. This is not something that is safe.
I had , after about a month , finally received my prism glasses thru the optometrist and they corrected my vision, for about 5 days when it self resolved. Thought it was a one off event, but it returned and a little differently , I had vertical double vision with left eye 'high' , when it came back it was right eye 'high', so script glasses were no use.
Saw the neuro who put me on pyridostigmine 120 mg 3x day and vision resolved again. So I self stopped the pyrido and all was well, for a few months. Now I have it back, only now side by side double vision , right eye just won't go all the way 'that way' , some slight ptosis every now again.
Latest neuro visit suggested surgical consultation, scheduled for Jan for thymectomy.
Sorry this so long and hijacking thread, just couldn't figure out how to start my own post/thread.
Rhanson post above really helped to understand the pharma , thx!
So... hello and I will apologize in advance for being a pest
My neuro said it takes almost 6 months before you see results and I am wondering what those results will be. I will continue on the pred and Mestinon as well. Overall, I feel okay for the most part. My legs feel a little wobbly at times, but my hands seem okay, whereas when this started, that is where it started in my hands. I can sleep okay and eat, but just struggling with all of this. If I get this straightened out, no more trying to do it myself. I am not a fan of prescription meds, but I have a feeling I am going to have to concede with this.