Excercise Question

[elephant]

Thanks for that article Palmra about the guy on home dialysis. Wow!

[Sangye]

I agree with what others have said. Keep your exertion levels low: overall exertion, so that it doesn't use up resources you need for healing, and individual muscle exertion so that you don't damage tendons and ligaments. It's very easy to rupture an Achilles tendon with running or even a hearty stretch. In general, go for time, not intensity. Tai Chi is great-- unlikely to injure yourself and very restorative.

I don't know the pred dosage where you can actually put on muscle or at least break even. I suspect it may be 10-15mg. My reasoning is that the adrenals don't become dependent on pred until 20mg. Below 20mg your own adrenals are still functioning to some degree and helping to balance the catabolic (muscle-destroying) aspect of the pred.

Palmyra, Cindy Abbot never took pred. That makes a big difference in her ability to exercise and the type she was able to do.

[Palmyra]

Palmyra, Cindy Abbot never took pred. That makes a big difference in her ability to exercise and the type she was able to do.

Wow, how she was able to manage that (no pred w/ Weg)!? I think Alison's joints/ligaments/tendons would have been suseptable even without boatloads of previous pred. When she flairs, her joints are hypersensitive.

As I said, exercise is such an individual entity. Cindy Abott and the triathelet on dialysis were obviously rare birds to start with. I do think muscle mass is an interesting subject for those with autoimmune disease. (Or even for mangy middle aged 'ole me)

[elephant]

With all the medicines that I am on I walk on the treadmill for one hour four days a week, sometimes only three days a week. I don't run anymore or walk very fast. I still don't feel 100 % so I take an easy. I try to nap daily if I can. The last month I did not nap and I exercised two time's a week. So I am paying for it.

[Psyborg]

I figure until I talk to the Docs at CC this Friday I don't know how serious my condition is and I'm trying to listen to my body.

I started off very high on Pred from my family doctor to head off the intense pain. The Rheumatologist scaled that back fast because I was at 80 when I saw him first still. But I think I went too far down for no other treatment because when I hit 20 all the pain and some other symptoms started to return.

So I'm not 100% sure if it's my Pred reduction or pushing too hard...probably a combination of both based on what you folks are saying (AND THANKS BTW ) I feel better after excercise, but I do get some stiffness and soreness later.

There is a place in my town that has Yoga and Tai Chi classes, but only one yoga to three tai chi per week. I don't know that once a week would be sufficient...but I could be completely wrong too

[Sangye]

Tune into your body immediately following exercise (easy for most people) and also a few hours later. The stiffness and soreness you're feeling later on tells me that your exercise is increasing inflammation, which can take several hours to build up enough to cause symptoms.

Yoga and tai chi are amazing. Even if you do them occasionally you'll have benefits. I haven't been able to do either since I was dx'ed in 2006-- various reasons. I sure miss them.

[Tim Roberts]

I agree with everyone's comments about Wegener's and exercise. When I was diagnosed almost a year ago to the day, I inquired of my rheumatolgist when I could begin running again as I have been an avid runner for years before I became sick. She advised me that I should listen to my body and that I could begin walking and then running again as I was able. With that advice, once I was released from the hospital I walked both morning and evening for about a month and then slowly, slowly began running again. My hope was to continue to build very slowly until I hopefully got back to my original regime before I got sick. This has worked well for me (although I know we are all different) as I have been off of prednisone now for over four months and I continue to take methotrexate once a week. I am for the first time, going to clock 20 miles of running this week so I am still continuing to build. My hope would be to run a half marathon next summer but I am also a realist so I guess we will see. I can, however, tell that the eight months on prednisone has taken its toll on my muscle mass but slowly, slowly that is returning a bit. I don't know if it will ever all come back but I guess I'll take what I can get at this point in time. Just my experience for what it is worth.

[Sangye]

I'm so happy to hear how well you're doing, Tim.

[Tim Roberts]

Thank you Sangye and I appreciate your kind words. I do know, however, that today is today and none of us know what tomorrow brings. So far things have gone well for me but that may not always be the case. I'll just appreciate today and take whatever I can get. As you have all taught me, this is a strange disease and it can turn on a dime and we are all different.

[Hammy8241]

Good news Tim and well done (20 mile a week – I’m on 8!). A half seems a long way away for me but small steps and periods of reflection before moving on again is necessary with WG.

Exercise is all relative. Some of us try long jump down the stairs, other motor racing around Disneyworld, dog walking appears safer but those who can exercise should.

Psyborg, you can continue as before but it will do you no good in the long run. The only way is to ‘play the game’, listen to the advice. Hard as it is to hear, unless or until you get the WG into remission (and that can take anything from a year to never) ‘normal service is not going to be resumed’. Please try to accept that your life is now different. I found that the hardest part about WG and it has taken several months to arrive at an exercise/WG balance.

As some of you know, I have returned to running whilst on pred (30mg & Mtx) because, despite the potential dangers, I mentally feel the need. I am building slowly with very small, achievable goals and listening very carefully to my body.

Currently exercising 3 times a week for 30 mins on a treadmill on a hill programme. Yes, muscle loss is terrific and I am no where near ability wise as I was a year ago. I also need a sports Bra! I do however, monitor closely how I feel after the exercise and the days after. The first sign of tiredness I will back off.

I have had to accept that to run slowly is better than no running and I feel much better for it. I’m going for a 5 k race at the weekend but I WILL NOT be racing it , but rather using it as a benchmark and as a social event to see my old running club buddies.

I’m quite nervous about appearing in public again wondering if I will manage it. I’ve got some friends to jog round with me for support. Hope I don’t cry all the way round!