So sorry you are having these issues. I saw your post yesterday, but was unfamiliar with this form of myasthenia, so I looked around a little before posting. You've probably already seen this, but I'll post a link just in case.
http://www.ncbi.nlm.nih.gov/pubmed/18567856

The jury is out as to the effectiveness of thymectomy, but that's also the case with regular mg, so it probably wouldn't hurt. Also, have they mentioned Cellcept or Rituxan? Cellcept can be given while your still on prednisone, and can possibly allow you to taper off the prednisone.
I have read other articles, can't put my finger on them at the moment, about the good results with Rituxan in musk mg. I was researching Rituxan because I had it myself.
Unfortunately, besides your body, prednisone also affects your mood and outlook.
It affected both my body and my spirit, and did not help my disease, but instead made it worse, so I'm glad I don't have to take it.
I really do feel for your situation, and can only hope and pray that you get some improvement and can get off the prednisone, or at least reduce it to a acceptable level.
Please don't give up, but make your concerns known to your doctor and maybe they can come up with a different treatment plan for you.
XOXOXO

Thank you so much for taking the time to reply to my post it truly means a lot. My neurologist has mentioned other medication I can take but he also mentioned those come with high risks of cancer long term? I had forgotten the medications he had said but I am meeting with him June 2nd and will bring up these two medications you are taking about. I am happy to hear you do not have to take prednisone any longer that must be such a relief for you, hopefully I can do the same one day. Thank you again for your kind words it is much appreciated. Xoxoxo

Cellcept has the least side effects of all the prednisone alternatives and Rituxan has proven to be very effective in a lot of myasthenics. When I first got Rituxan, I had almost instant improvement, but it only lasted about 2 1/2 to three months. It did, however, increase the time between needed plasmapheresis treatments. I used to have to get them every other day, now I can go about seven to eight weeks between sessions.
Most doctors will try Ivig or plasmapheresis before moving to Rituxan.
There is now a subcutaneous form of Ivig that a lot of people have found more effective and with less side effects than regular Ivig through the veins.
Hope some of these suggestions help. Best wishes.

So i'm new here, but want to see if I understand this post correctly...LOL. I am NOT officially diagnosed, but nuero doc said he "thinks" it could be MG. Just found out TODAY that my MuSK test was negative....so is that the same as a "positive Anti-MuSK" test? I feel pretty stupid posting that question, my research methods class was 15 years ago! :)

Also, saw the discussion on the 180mg Mestinon time release over/under medicating. Informative but since Neuro doc put me on those today and I just picked them up...i'm nervous to say the least.

He ordered another blood test for me and I have an MRI scheduled. I saw him last week and although he didn't say it, I assume the MRI is to look at my thymus? Any thoughts would be appreciated all.

Awesome group here!
Thanks in advance

@tyethede if your musk test came back negative that means you are negative anti-musK not positive. And also and MRI would be used to look at your Brain a CT scan would be used to look at your thymus. Thymus gland is located in your chest region. Ive had the MRI just to make sure everything was okay Up there . Goodluck to you ! Xoxo

thymectomy does nothing for those who are seronegative , we respond better to steroids
ive been on prednisolone for about 17 years , cellcept about 6 , after a while u just stop counting