Tyson,
I hope you get some answers soon. I know this is a frustrating disease. I noticed you said you still have a droopy eyelid even while taking Pred. I too still deal with that and have been on Pred for about 2 months now. That is where my Mestinon comes in. If I take it when my eye starts drooping it usually helps for 4 hours or so. Neither Mestinon or Pred alone help but the combo seems to help temporarily. I can tell you though that after about 5 or 6 weeks of Pred I feel more like my old self than I have in a year. Give it some time to kick in and I think you'll be amazed at the results. I also have my energy back and have been able to walk again so try not to stress about feeling flabby. There are some scary side effects to the Pred in the short and long term but I would take the way I feel now with the Pred over the way I felt without any day!!! Hang in there and try not to overdo it on your trip. I know it is sooo hard. My biggest problem is knowing when to say I've done enough. The better I feel the more I fight that but I have realized I pay for it later if I don't force myself to take a break now and then.
Kendra
Quote:
Originally Posted by tysondouglass
Nicky- When I had my crisis a couple weeks ago I was in the hospital for a week, recieving emergency plasma exhchanges for a few days, then after a week was let out and did outpatient plasmapheresis to get even more strong. I started prednisone when i was in admitted that weak, but yet only 20mg. (4 pills/day) and thats all he wanted me on, maybe because i had a crisis and he wanted to my body through as little as possible.
But, that information is very helpful, i will definitly make my doctor aware of the anemia thing when I see her tomorrow. Im just going to ask her to do a total workup, or as much as she can with the blood she draws tomorrow to cross out anything else on the list.
Im sorry you had those sideaffects, prednisone really does suck.
Im getting puffy and out of shape, and at 17 i hate that! Its so frustrating not to be able to go out with my friends. I just want to be cured. Im going med school to find a cure for this disease for all of us!
Thanks for your concern. I hope your feeling well.
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