I would say yes, the pred taper is likely the cause of your exacerbation. Please ask the doc if you can go back up to the dosage at which you were more stable. You simply have to have some symptom relief at this point.

Some feel that pred is the most horrible thing in the world. While not ideal, it is life-saving and life-giving when you are looking for another option. I took prednisone for the majority of the last 20 years and I'm very happy to be done with it as of last June, but also very grateful that it was available, as I doubt I'd be alive if it weren't.

Sorry the ER docs have not been helpful. I guess I'm extremely fortunate as I have never encountered flat out ignorance when in my tiny local ER. I've had nurses go out and do a search on MG, but no one has ever tried to doubt my symptoms. That is a real shame.

Sorry about the fibro as well. I suspect that you having that, which is often considered a "trash can diagnosis" does not help your situation. Don't let that get you down, however, because YOU are the expert on your body. Be persistent!

Yes, I absolutely HATE this disease! My Neurologist advised that I go to a local ER. I’m not doing it, unless I’m close to death. What’s the point? It will be several hours of being evaluated for a stroke ( it’s not a stroke), then I’ll be discharged with instructions to follow up with my PCP. Been there, done that. How many head CTs can a person safely have?? The Myasthenia will be totally ignored or doubted.

Today, I feel better but I’m strictly resting, not exerting myself in any way. I guess I’ll have to start accepting feeling crappy is the new normal.

Barbi-girl

I have started accepting feeling crappy. I agree with 4-eyes about the Pred. A neuro-muscular Dr told me a long time ago about all these bad drugs and said it was my decision to decide what quality of life I wanted. I know a lot of these drugs we take are bad but the other option is not that great.
Mike

Hi Barbie girl, the most important thing is not to give up. I got diagnosed 3 years ago and switched Neuro as well because first one overdosed me on mestinon and I ended up in ICU for 2 weeks. Now I have a wonderful doctor and she gets me, never doubt me even though I am seronegative and I was diagnosed based on my symptoms only. I carry a note
From my neuro in my wallet stating that I have MG so if I ever end up in ER I show it to the doctor there. Then it's not just what you tell them my diagnoses are but it's an official note so they don't question another doctor.
Anyways, I wanted to tell you my experience with ivig. First I was taking it for 2 days in a row every 4 weeks. I was ready to give up on it as I didn't see results. Then we switched the brand of ivig and things got better. The more times I had my ivig the better I would feel after. I could tell it started working but I would have 2 to 3 good weeks and then 1 bad week right before next infusion. My Dr suggested we switch to infusion every 3 weeks and it's amazing how now I'm symptoms free 98% of time. Stopped taking prednisone April last year and I take mestinon only in the morning 60 mg. Also I'm on Imuran for last 2 years. All I'm trying to say by sharing my experience is that maybe give it little more time? I guess ivig is type of medication that is suppose to make you better almost immediately but in my case I needed time. Also how much ivig you get suppose to be based on your weight. My doctor gave me little extra.
I hope you will get better soon. I remember that I was saying exactly what you are saying now that I should get used to my new normal because I won't feel good like before ever again. Be your own advocate and don't give up. It will get better. It has to!

Having a letter from my Neuro ready to give to ignorant ER doctors is a GREAT idea! Thank you for that eye opening suggestion.

I had given up, as everyone could probably tell from my previous post. Two weeks following my last monthly IV infusions, I noticed my arm and limb weakness were not quite as bad as usual and no slurred speech or swallowing issues. As the days went on, I could feel other MG symptoms being milder. The most noticeable improvement was being able to walk around my house without a walker or cane, which is huge. Now, I still have targeted weakness if I push it too far so I’ve been careful to rest when I feel myself sliding. At night, when I’m just plain worn out, I’m having difficulty breathing if I try to talk or exert myself. So far, this improvement has lasted 11 days.

I can’t wait to discuss this improvement with my Neurologist later this week. I honestly don’t know if it’s the Cellcept finally kicking in ( 5 months) or if it’s due to the IVIG. My continued breathing weakness is a bit concerning but it’s not at crisis level. Yesterday, I noticed that I couldn’t sing a song out loud which was playing on the radio! I got winded and had to stop.

Barbi-girl