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...
I had hip surgery in October, 2015, and around Thanksgiving I got a droopy eye. My GP suspected third nerve palsy, and scheduled me for an MRI. My symptoms progressed quickly when I started having swallowing problems. When I told my GP that, he suspected MG, but said I needed to see a Neurologist. Of Course, the one Neurologist was on vacation, so I couldn't even schedule an appointment right away. My symptoms got a little worse, so I had a friend drive me to the Emergency Room at the University of Vermont Medical Center. That is three hours away, but they have a Neurology Department. They were able to do all the tests that day, and were convinced that it was MG. When the blood tests were sent to the Mayo Clinic and came back positive, the diagnosis was confirmed. That day they started me on Mestinon, which helped, and set me up with some appointments with a Neurologist. After a couple days, I had problems breathing and went to the local hospital emergency room. They consulted with UVM, and put me on a prednisone taper which stopped the breathing issues. This also got me in to see a Neurologist in Burlington a lot quicker.
Fast forward to today. I am on Cellcept (1,000 mg/twice a day with monthly blood tests), mestinon on an as needed basis, and my prednisone is being tapered. The Neurologist is hoping to get the prednisone down to 7.5 mg a day or to 0. So far, no nasty side effects from the meds. I am back to work full-time, and looking forward to getting my other hip replaced once I get tapered off the prednisone.
I am going to continue to take the three hour ride up to Burlington because they have a great team that is familiar with MG. In fact, when I went to my last appointment, there was just one notice on the glass wall by the receptionist. It was a reminder from the MGA to sign up for the registry.
I realize this could all change tomorrow, but I realized very early on that stress triggers my symptoms. I made a commitment to myself to not let anything bother me. If I start to feel down, I tell myself to snap out of it.
Fast forward to today. I am on Cellcept (1,000 mg/twice a day with monthly blood tests), mestinon on an as needed basis, and my prednisone is being tapered. The Neurologist is hoping to get the prednisone down to 7.5 mg a day or to 0. So far, no nasty side effects from the meds. I am back to work full-time, and looking forward to getting my other hip replaced once I get tapered off the prednisone.
I am going to continue to take the three hour ride up to Burlington because they have a great team that is familiar with MG. In fact, when I went to my last appointment, there was just one notice on the glass wall by the receptionist. It was a reminder from the MGA to sign up for the registry.
I realize this could all change tomorrow, but I realized very early on that stress triggers my symptoms. I made a commitment to myself to not let anything bother me. If I start to feel down, I tell myself to snap out of it.
You sound like you have it all together.
Great start to this world.
My first MG symptoms came right after I had surgery. I'm glad that you are in a group that is familiar with MG, and that they will check and double check the anesthesia that you can have with MG. You can meds to avoid listed on myasthenia.org, under Living with MG, under Drugs to avoid.
Best Wishes to you.
Cellcept can be slow to work (months to a year or so and for some not at all) and so you may have difficulty dropping prednisone. Take it very slow and watch for MG coming back.
Many neurologists try to switch prednisone to alternate days, and that may help with the taper (ask about that). Read up on adrenal insufficiency due to tapering prednisone so you are aware of what can happen.
Good Luck
~Joe
Rhanson, the neurologist did put me on an every other day taper. First two weeks alternating 70/20, then 70/10 (where I am now), then 70/0, 60/0, etc. until I get down to a lower level where we will slow it down. This seemed a little quick (an average of 5 mg taper every two weeks), but he wants me to try this since the prednisone was doing a number on my type II diabetes. He also indicated that the every other day taper should help me with any side effects.
I won't hesitate to discuss slowing down the taper if my symptoms start to worsen, but I really want to get off the prednisone to the point where I can get my second total hip replacement. Ideally, I would like to be in remission so I can get it done at my local hospital, but I have a feeling I might need to have it done in Burlington (UVM) in case of complications from the MG.