Hello

[Sangye]

Thanks, purr! My ER trips have definitely slowed down the last couple years. The first year I was constantly in the ER. I have no idea how many times! Many resulted in hospital stays (I've had at least 20 in 4 yrs) but not all.

Good for you for educating yourself about Wegs. We have to learn about the disease, the drugs and how they each affect us.

[Doug]

Hi Doug,
I know the feeling of walking on bruises--or I guess I have sometimes thought of it as walking on pins and needles. Were you taking anything to help with the pain associated with it? I know how uncomfortable it can be. I am glad to hear that you have had some improvement and I hope that continues for you!

Actually, I wasn't prescribed anything for that discomfort/pain, probably because I resisted drugs when I could. Until recently, I was on Gabapentin (600mg, four times daily, with a 60mg Cymbalta on top of the bedtime Gabapentin for good measure, I guess), but it was presecribed for postherpetic neuralgia that started in November 2007, but went untreated until August 2008, when the pain got to be such an issue, I saw a physiatrist. I'm still taking the Gabapentin on a reduced level- as needed- but note that it does help me with the WG-caused peripheral neurapathy, such as that is.

[JanW]

I don't take anything for the foot pain other than a couple of Tylenol after PT. The PT does seem to be helping me regain mobility, and the foot doesn't hurt at all at rest -- and most of the time it's at rest. It's just annoying not to be able to do the things I'd like to do, but I wouldn't term it a chronic pain condition.

[jeriorleans]

A.J. was weaned off the predisone the same way 60/50 for a week then 60/40, then we did 60/0 and started dropping the every other day by 5 if that makes sense.