4 1/2 months post-thymectomy update (and a little grumbling)
 

My thymectomy was August 27th. Pre-surgery I was taking upwards of 700-800 mg of Mestinon every day, and on bad days over 1000 mg, and 10 mg of Prednisone 4x week. Became very ill in July and ended up with 5 courses of IVIG through the first week in August, which made me (barely) stable enough for the surgeon to decide to go ahead with the surgery.

Within two weeks I was down to around 300 mg of Mestinon every day. By mid-October, down to 120 mg/day. Coming through December I've been down to 30-60 mg/day. And today marks the second time in the last week I've not had to take any.

I saw my neurologist today and he has agreed that I could try to taper the prednisone over the next couple of months and see how what happens with my symptoms. He expects that my symptoms will increase in severity and as the prednisone comes down that the Mestinon will go back up a bit, but in the long run better more Mestinon and less prednisone, so here we go.

I feel like the results from the thymectomy have been beyond my wildest dreams and somewhere deep down was starting to *hope* that maybe this might all go away. I still have fatigue issues, but have pushed myself to work as much as I can (around 25 hours/wk) in the past couple of months so that I can see what I'm able to do. I work four days per week (M, Th, F, Sat) 4-7 hours/day and have discovered that the end of Saturday, which is three days in a row, I'm beat. Ideally two days on with a day or two of rest in between seems to be best and I'm going to try to adjust my office days as soon as the option is available to me. I have two young children and always assumed I'd be able to work more as they got older; now thinking maybe that time won't ever come?

I asked my neurologist "Do you think there will be a time I can say that I don't really need to wear my medic alert bracelet anymore?" His response was that "It would have to be three or four years, completely medication free before I would give you my blessing on that, and those odds aren't great."

I'm thrilled with the benefits I've seen with the surgery, but feeling slightly deflated with both the limits to my ability to work (considering how much better I am) and the doctors comment. I'm usually pretty realistic about this stuff, but I think the surgery made such a difference it was easy to let my hopes get up a little higher than I would normally let them go.

It's so fantastic that you have seen such an improvement. Try not to worry about things that are too far out...for now it would seem the next step is to wean off the pred and then reassess. But we all hear you. Where is that crystal ball when we need it!!