Juanitad,
I take 40 mg of Pred every other day. It has taken care of most all of my general weakness and other symptoms except for the droopy eyelid. When I am tired I can feel it falling shut on me. Since I've been on the Pred. the Mestinon seems to help alotwith the ptosis. The Mestinon alone did nothing for it either but the combo seems to do the trick. I only take 2 Mestinons a day, 1 around 10:00am and another around 5:00. I can tell when it is time for the 5:00 dose because my eye starts drooping. I have adjust my Mestinon dosage up and down and 2 seems to be the perfect dose for me. Anything more and I start having the generalized weakness in my legs and jaws really bad. I have been on my Pred dosage for almost 6 weeks now and for me it seemed to really kick in around 3 or 4 weeks. Hopefully the increase to 69 mg will start helping soon.
Kendra
Quote:
Originally Posted by Juanitad
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  !) |