Thoughts?
 

Hi all! It's been awhile, but since more heads are better than one sometimes...

Had my thymectomy in Aug. 2014. At the time I was on Prednisone, taking up to 1000 mg of Mestinon per day, and ended up on IVIG.

Within weeks of the thymectomy saw drastic changes, with a continuous gradual drop in Mestinon use and was able after about 9 months to completely stop the Prednisone.

As of the end of this past November I became completely medication free. At worst I had very mild transient symptoms that were never bad enough to need anything. Until about 10 days ago and everything came back...generalized weakness in my limbs, shortness of breath, etc. Started with 30 mg of Mestinon the first couple of days when the SOB would start to act up, now up to 120 mg/day.

Was scheduled to see my neuro for a 6 month f/u in April, which is now moved up to this coming Tuesday. His immediate recommendation is to restart Prednisone...which is where you guys come in.

When I was on the Prednisone the anger & agitation were HORRIBLE. I have two young children and my patience for them was suffering, which means they were too. My husband tolerated it, but once I weaned off he was honest about how bad it was, and it was pretty darn bad.

So, I'm reluctant to go back on it. My thoughts: this could be a temporary flare-up that could calm down on it's own and I can manage the symptoms with Mestinon in the meantime. I also know the Prednisone can make things worse before they get better; so if I start the Prednisone and that is the case what if it turns a temporary flare into something more until it kicks in and then I have to go through the weaning/withdrawal process again?

Am I making a poor choice to not follow doctors orders, or do I have good arguments for taking a wait-and-see approach? I just wish I knew if this was the start of another long-term/permanent bout with symptoms, or a short-term flare-up.

Thoughts anyone? Please and thank you!

While I generally favor listening to the medical establishment, patients are the ultimate decision makers for their own care. Added to that is the fact that this drug was not well tolerated before, the fact that there are many different treatment options, and I think you know the answer to your question.

Best of luck.

I would suggest this question. Are your symptoms managed on mestinon or do you need something else. If things are good with just mestinon then I would just take that, but if the symptoms get worse or go in another direction then you could go from there. Like the other poster said at the end of the day the patient has the last say so.

I would say personally question every thing and make your own decision based on what's best for you. And at all costs avoid going back on preds if at all possible. If I had done this 13 years ago I would in all probability not have type II diabetes along with PN and Retinopathy as well as MG now.

This is just my opinion though but it is strongly held.

Regards John