Need Advice, New diagnosis of MG
 

I recently have been diagnosed with MG due to a positive Antibody test and clinical symptoms. At first I was started on Mestinon and then went to the ER due to Shortness of breath and difficulty swallowing. I was admitted to 5 days for IVIG and started on 80 mg of prednisone. I did get some strength back and was sent home only to return after 3 days because of worsening of weakness, swallowing difficulty and breathing. He felt that I was actually have a reaction to the prednisone. I was admitted for 10 days and had 5 plasma exchanges. I did feel much stronger was improved in my breathing, weakness and swallowing and was discharged home on Prednisone 80 mg and was to start Imuran on my follow up visit in one week. Well, after home for 2 days I felt weak again, short of breath and like my throat was closing up. I called the neurologist and he has me come back to the hospital and kept me over night. They did an EGD and said I had a stricture and dilated my throat. My neuro asked if I was having anxiety (Well duh!!) and that most patients have longer benefits from the plasma exchange and that he is puzzled. Since, I was swallowing ok he sent me home and I'm to follow up Monday at his office.
So, I came home Thursday and went to work today. I only made it 5 hours. My eyes, neck and trunk muscles got weak. All I could do is sit at my desk and barely hold my head up. I finally went and spoke to my boss and told her that I just couldn't keep upright and of course I came home and went to right to bed. Rest about 3 hours and now am up. I feel stronger than I did when I first got home but I not sure what to do!!
Sorry, so long but I am beside myself. Has anyone has all these treatments and still has weakness? Am I not giving it enough time.? Any advice would be so appreciative. I am so new to all this and I am so tired! :(
Thanks for listening (I guess that would be reading)
Lola

What medications are you currently taking and how much?

Have you had a recent surgery/illness/infection that exaccerbated your symptoms? I had surgery last year that kicked off my MG full-force.

Was your doctor OK with you going back to work so soon after such severe symptoms? I think I would ask to take some time sick/disability/personal time until you can manage your symptoms better. The medicine does improve symptoms, but I am not sure I will ever have the stamina to do all the things I did before MG. You may need to reevaluate your activities and slow down until you have a better understanding of your new limitation. Trying to go back doing too much too fast may have been the problem. I was the same way. It took me a whole year for me to realize that I had to change my expectations or I would relapse with worse MG symptoms.

I hope I have been of some help. It will take a while to find your balance in feeling better and doing too much.

kathie

I am currently on Prednisone 80 mg daily. I tried Mestinon but didn't have any improvement. I asked him if I could return to work and he didn't hesitate. I had a UTI before the IVIG. He thinks that is what triggered the worsening of symptoms.
I know I have to slow down but I also need to work although if today was any indication I not sure what I am going to do. I will be curious to see what he has to say when I follow up on Monday. The neck weakness and drooping of the eyes is what is the worst at this time. Thanks for your response.
Lola

I am on 40 mg of pregnisone, 60 mg mestinon 3 times a day, and 180 mg of mestinon at night. What was the dose of mestinon that you tried?

Try to rest a lot over the weekend. Infections and other illness makes MG much worse. I would try a couple of half days to ease back in. Mestinon and caffeine get me through the day. I work fulltime and I would not make it through the day without it. I can feel an improvement in my breathing and eye symptoms in 20 minutes after my dose. I have to revolve my activities around my mestinon dose when I am strongest. Going up and down the stairs and raising my arms above my head is what drains my energy the most. The mestinon only gives a partial temporary improvement. I have not found any combination of treatment to make me feel my pre-MG self. They just make me more functional and life manageable.

Let us know what the doctors says and good luck
katiie

Sorry to hear what you have been going through!!! My question is that if they thought it was a reaction to the prednisone (the first bounce back of weakness), and you are on 80mg now.. could it still be the prednisone?? From what I know prednisone itself can cause weakness, especially in the begnining.. Have they talked about starting the prednisone at a low dose (aka starting at 5mg or 10mg and slowly going up to a higher dose)... when people are hit hard at first with prednisone the weakness can worsen.. Good luck and keep us updated!

When I started prednisone, my symptoms got much worse. I could not even tolerate 40 MG. we tried 30 for a few weeks, but it was awful. I am now in the process of getting off prednisone and on cellcept. The transition will take six weeks, but my doctor said it was clear prednisone was not my friend. He was not sure what was true MG issues and what was prednisone. I am at 20 now and feel better, but can't wait until I am totally off of it and just on cellcept. Hopefully the meds are the bigger source of your issue and your dr can find a better solution.