I was diagnosed with WG in June of this year, but as far as I can tell I've had it most of my life. My symptoms are largely minimized now but included: canker sores - up to 100 at a time, could not close my jaw, paralysis, double vision, unbelievable pain in my limgs, fever, chest pains, inability to breathe... yada yada yada, blah blah blah. (sorry but I feel like having this tattood on my forehead because I have to go over it again and again with insurance, healthcare workers, strangers, people at church, family etc.) YES, I am in a bad mood today! :-)

I have had MRI, Echo, and blood work up the wazoo and there is no apparent organ damage. My kidneys do not seem to be involved.

However I am still sicker than a dog. I have sharp pains intermittently, profuse sweating, occasional fevers, big time fatigue, nausea. I am getting better however. My lab tests show that I am continuing to improve. My SED was 5 and then 9, down from about 100.

Here are my concerns:

+ I am on Prednisone (down to 20 from 70mg), Methotrexate and Bactrim. webmd shows a potentially fatal interaction between methotrexate and bactrim, so I stopped taking the bactrim this week and my heart pain and shortness of breath have more or less cleared up.

+ I am seriously overweight but fortunately methotrexate has all but taken away my appetite. I am focusing on fruits, veggies and lean protein like chicken. Presumably this is OK.

+ I am trying to walk 30 minutes a day on our treadmill and this wipes me out for the day. Is this "normal?" Will exercise hurt me? I'm worried about the chest pains and shortness of breath.

+ Can I lift weights?

+ I have been out of work for about four months and can't currently imagine getting back to work any time soon. riding in the car is a big, big deal. I drove for six hours this weekend, which was a really cool accomplishment but left me totally wiped out for two days afterwards. Is this "normal?"



Thanks! Any help is appreciated