Marci
10-31-2015, 03:13 AM
Hi Fellow Weggies, I went to the West Central Ohio Vasculitis Foundation meeting last night and saw Pete. I promised him I would log in and say Hi. It's probably been over two years since I've posted. I do lurk a lot and I'm still learning so much from this forum. I keep thinking I will log in and post and then I don't. My heart is happy when I read good news and it breaks when I read that a member is going thru a really tough time and especially when I read that another member has died. The support and caring here is amazing.
The meeting last night was special. Dr Hoffman who started the vasculitis clinic at the Cleveland Clinic spoke. There was a lot to take in and not so sure this morning my old brain remembers it all, but I came away feeling so good about all the research that is going on out there to help patients with vasculitis. I was also so pleased that Pete got to meet Rob and Haley (his daughter who has Wegs). They don't live to far from each other and I know Pete can be a great resource for them. I use to work with Rob and he's just a very nice guy. I hadn't seen him since I retired and it was a real treat to touch base again and meet his daughter who has been going through so much.
Now, update on me. This has been the best summer I've had. I have been in remission since Dec of 2013 but not always felt the greatest. I have not had any flares yet.....YEAH! I'm still on MTX but have been off of Pred since Oct of last year. Had a few bumps when got down to the low dose Pred so would go back on and would wean again. Finally after four tries I stopped having joint pain come back. I weaned very, very slowly. Sometimes I don't feel so hot for a few days after the MTX but not every week. Talked to Dr. Villa-Forte about it and she said to go down to 17.5 mg and if that didn't help to go down to 15mg. but not go below that. I'm still at 17.5. To be honest It makes me nervous to go to 15 because I don't want a flare and I'm scared at that dose the "Beast" might raise it's ugly head. I don't enjoy exercising, but I think the main reason I have felt better this summer is that I go to swim aerobics two days a week and walk for three days. Getting out in the air and sun really did make me feel better and my legs feel stronger. It scared me last Feb when I hadn't done anything for months and I started having this feeling that my body was atrophying. Never had felt like this before. It was like I was going to slowly wasting away and my body was in total control. I got my butt out of the recliner chair and forced myself to get moving. I still don't always enjoy it but I've started to look exercise like the MTX. If I want to keep going it's another pill I must take. I tend to get the post Christmas Blues and this also helped that. It's not quite the "Happy High" I got from 60mg of Pred but much better than my Feb. blues. This winter will be my test to see if I continue to be faithful to keeping this old body moving.
Maybe I should turn over a new leaf and promise to come here and post more often. Another good pill to put in bag. Marci
The meeting last night was special. Dr Hoffman who started the vasculitis clinic at the Cleveland Clinic spoke. There was a lot to take in and not so sure this morning my old brain remembers it all, but I came away feeling so good about all the research that is going on out there to help patients with vasculitis. I was also so pleased that Pete got to meet Rob and Haley (his daughter who has Wegs). They don't live to far from each other and I know Pete can be a great resource for them. I use to work with Rob and he's just a very nice guy. I hadn't seen him since I retired and it was a real treat to touch base again and meet his daughter who has been going through so much.
Now, update on me. This has been the best summer I've had. I have been in remission since Dec of 2013 but not always felt the greatest. I have not had any flares yet.....YEAH! I'm still on MTX but have been off of Pred since Oct of last year. Had a few bumps when got down to the low dose Pred so would go back on and would wean again. Finally after four tries I stopped having joint pain come back. I weaned very, very slowly. Sometimes I don't feel so hot for a few days after the MTX but not every week. Talked to Dr. Villa-Forte about it and she said to go down to 17.5 mg and if that didn't help to go down to 15mg. but not go below that. I'm still at 17.5. To be honest It makes me nervous to go to 15 because I don't want a flare and I'm scared at that dose the "Beast" might raise it's ugly head. I don't enjoy exercising, but I think the main reason I have felt better this summer is that I go to swim aerobics two days a week and walk for three days. Getting out in the air and sun really did make me feel better and my legs feel stronger. It scared me last Feb when I hadn't done anything for months and I started having this feeling that my body was atrophying. Never had felt like this before. It was like I was going to slowly wasting away and my body was in total control. I got my butt out of the recliner chair and forced myself to get moving. I still don't always enjoy it but I've started to look exercise like the MTX. If I want to keep going it's another pill I must take. I tend to get the post Christmas Blues and this also helped that. It's not quite the "Happy High" I got from 60mg of Pred but much better than my Feb. blues. This winter will be my test to see if I continue to be faithful to keeping this old body moving.
Maybe I should turn over a new leaf and promise to come here and post more often. Another good pill to put in bag. Marci