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Old 12-02-2009, 06:46 PM
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Juanitad Juanitad is offline
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Join Date: May 2009
Location: Eastern TN
Posts: 314
10 yr Member
Juanitad Juanitad is offline
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Juanitad's Avatar
 
Join Date: May 2009
Location: Eastern TN
Posts: 314
10 yr Member
Default Prednisone - Here I come again!

Hello everyone - I have a couple of questions, but I'll give you a brief history of my mg first - it might help with the answers. Dx in 2000 at age 50. Some DV, but mainly general overall weakness with prounounced eyelid droop in the right eye. Went on Mestinon and Cellcept pretty quickly and it held me until late 2004 when I started having a lot more overall weakness problems and the DV and breathing got really bad. First IVIG in May 2005 and thymectomy in Aug 2005 where they discovered a Stage II thymoma for which I had 28 rediation treatments. Dx with Sarcoidosis at the same time so went on 60 mg of prednisone/day. Over the next 18 months, tapered off pred and felt pretty good; still on mestinon and cellcept. About 6-8 months ago, started having problems again with overall weakness, breathing, swallowing and DV is back worse than ever. I've upped my IVIG to 2 days every 2 weeks which helped some, but I finally caved and went on temp disability about 3 weeks ago. Right now I'm just approved through the end of the year because the goal is to get this back under control and return to work.

I started on 40 mg pred 3 weeks ago and it has helped the overall weakness, breathing and swallowing, but has done nothing for the DV. Neuro just agreed to up the pred to 60 mg/day effective today and we'll see how that does.

My question (and I know this will be different for everyone, we like to keep things unique!); when did you notice improvement of DV from pred? How much pred did you have to take to get improvement? For how long?

I'm just frustrated I guess, I want it fixed NOW!!! (Don't we all!)
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