weight problem

[JanW]

Frankly the researchers at the Symposium acted like it was a 'no brainer' that the vast majority of people with WG *should* be coming off of pred and having their disease controlled solely by immunosuppressant, and/or at other points having a medication free remission. As I have said many times, I met several people at the Symposium who were either off meds, and had been for a few years, or were currently flaring but had been off meds for a long time (in one guy's case more than 20 years). I think that what the researchers know is that docs who are not as familiar with the disease leave people on pred for a long period of time, because it helps to treat symptoms that really should be controlled by more/a different kind of immunosuppression. I met people there who would just have the pred being pushed up down up down constantly, with their main engine (mtx, cellcept, ctx, imuran) always staying at the same level. Kind of ridiculous.

I add too that my ENT has done more than 100 saddle nose repairs (and many people with these do have 'limited' disease with just upper resp involvement) and has only once operated on a patient who was on any meds whatsoever, and that was 2 mg daily pred.

My rheumy believes that pred is such a dangerous drug that docs should generally be trying to get their patients off of it all together, if that is at all feasible for their case, or never start it at all with them (which he has done in a few cases, including mine).

[elephant]

You go Brooke, I have been walking and it makes me feel better about my self. I usually go how I feel that day. If I feel up to it I do it, so I usually walk 4 days a week. I am on 5mg of prednisone and hope to come off it. I am taking it very slow.

[freakyschizogirl]

Keep going elephant!! Maybe we should start a new thread to track each other's weight loss and keep ourselves on the straight and narrow!

[dunkie2202]

Yeah i dont weight watchers before. I know how to eat properly. its just the exercise. I walk pretty much at least an hour a day be it at work or with my pooch. But dancing is my biggest love.
A friend of mine has suggested we do Zumba too as there is a class starting up near us. Which looks like i will be roped into, lol

Go Sam....your off to a great start walking for an hour each day. Well done.... I've heard that Zumba is pretty intense lol. I would love to say I had the energy to try it to but my kidneys won't let me. I'd be lucky to walk 100 mtres. oh well maybe when I'm finally on dialysis I might get the energy too

[elephant]

When your kidneys are not functioning that well, it is very hard to exercise. I remember how difficult it was.

[Brooke]

Thanks Elephant, yes take it slow. 4 days a week is really good though! I am going to try and walk at least 30 minutes Monday through Friday.

[drz]

Thanks Elephant, yes take it slow. 4 days a week is really good though! I am going to try and walk at least 30 minutes Monday through Friday.

How far can you go in 30 minutes? Can you do that without stopping and resting?

[Brooke]

Drz -
Yes I can walk 30 minutes with out resting, I feel I am in remission (knock on wood!!!) On Saturday, I walked for 30 minutes and then my mom called and asked if I wanted to go shopping. We shopped from 1 pm to 6 pm. We took a break to eat but that was about it. I was up and moving and shopping!! No shortness of breath, no wheeze, no cough, I have been feeling great since last Summer. I had a sinus infection of some sort from about the begining of Nov to late December which has now resolved. I really do think the Rituxan has helped me. I will be doing another Infusion to keep the Wegeners at bay once my B Cells come back, as of mid Dec, they were still gone.

[Brooke]

Oh -
I am not sure how far I can go in 30 min, I would guess 1 1/2 miles.

[drz]

Drz -
Yes I can walk 30 minutes with out resting, I feel I am in remission (knock on wood!!!) On Saturday, I walked for 30 minutes and then my mom called and asked if I wanted to go shopping. We shopped from 1 pm to 6 pm. We took a break to eat but that was about it. I was up and moving and shopping!! No shortness of breath, no wheeze, no cough, I have been feeling great since last Summer. I had a sinus infection of some sort from about the begining of Nov to late December which has now resolved. I really do think the Rituxan has helped me. I will be doing another Infusion to keep the Wegeners at bay once my B Cells come back, as of mid Dec, they were still gone.

This really sounds great that you can do all this. It is encouraging for those of us that have trouble walking more than a couple hundred feet with out resting. Congrats on getting your remission and hope the Rituxan helps you keep your present level of functioning or even make it better.