Wegener's and exercise

[lawstudent2010]

All right, my parents and I have been debating this point and I need some opinions and feelings on this subject to this particular question.

Can a wegener's patient do intense exercise such as cardio, strength training, martial arts, etc.? Do any of these exercises cause or can cause a possible relapse of the disease or do significant or considerable damage to the body of a wegener's patient?

[pberggren1]

This is such a case by case question. But for most Weggies I think intense exercise is out of the question, or at least for long periods every day. Maybe some light cardio once or twice a week, but you have to be feeling really well and off pred, or almost off pred. Any stress can trigger a flare so exercise is really a case by case question. I would discuss it with your doc and see what he thinks. If you are considering do this kind of exercise you must be in really good shape and feel really good. I hope you can exercise at least some. Even walking is very beneficial.

[Psyborg]

I keep being told by my doctors to "go for it", which honestly baffles me a little. These are the Wegs specialists mind you, not the family doc. I think I agree it may be a case by case thing. My body seems to be reacting well to excercise right now though so I may be an aberration.

[Maestra]

I have been working on getting back into shape. I think it is a case by case decision and should be discussed with your docs. But, I have been trying to get back into running, and doing some strength training as well. I also work out on the wii with wii active. I'm not dropping any weight, but feeling good. I have been in remission since early '08 and have a kidney transplant in Oct. '10. I believe I have a mild case of WG. Talk with your doctors.

[Sangye]

Overly intense exercise can be a stressor to the body. I suggest you do as much exercise as you want, being mindful of how your body is handling it. Pay attention to increasing fatigue, pain, etc... and don't go into denial about it. Have fun!

[jola57]

I have begun swimming every day and walking 4km (2.5 miles), and just yesterday canoed 6.4km each way on Jones Lake and felt tine (had to change hands frequently thou), so go ahead and excercise but listen to your body and don't overdo it

[norcalian]

I walk for about 30 minutes a day and then do Yoga for 20 minutes right after. none of it is very high impact stuff...just something to stimulate the muscles. I wear a heart rate monitor to make sure that I don't over do it. I find that I have lower energy days when I skip this. I'm still in pretty active wegs (I think) and on higher doses of pred (50 mg)...but so far the exercise has been ok for me.

[BrianR]

I have asked my wife's Dr's about exercise numerous times and all said more or less what has been mentioned here; essentially what Sangye has said. They have all said to definately get exercise, be aware of how you feel and do not push yourself too hard but...as Psyborg says.."go for it". Certainly it is case by case and you will have to be your own watchdog based on how you feel. Some on this forum are pushing hard by runnning, cycling and lifting while still on fairly high doses of pred. These people are already addicted to exercise and know what they are doing and are well aware of when they are pushing too hard (IMHO).

At the risk of sounding like a know-it-all here's how I think one should approach it: Frequency is more important than intensity or duration. I would not hit it hard right off. Rather, do something at least 5 days a week even if only for 15-20 minutes a day. Marta's Dr told her to exercise regularly but do not be a "weekend warrior". There are much more risks involved with going hard once or twice a week and you get much less benefit than if you were to exercise frequently at lower intensity. Once you get settled into a nice routine of daily exercise (routine is the key - gotta make it a habit) then start by increasing the duration even if only on a couple of your weekly workouts. Then make one day a week more intense than the others and eventually have, at most, two intense days a week ("intense" is a personal thing - working hard but not so hard that you are seeing stars). Even healthy athletes balance their training between frequency, duration and intensity and are careful not to not over train with too many intense days; more important to exercise regulary and this is really what most people screw up. Too many people try too hard to get big results fast and they lose interest trying to stay on some sort of "program" and then they quit. Exercise, like diet, is a lifestyle and needs to be approached in such a way as it is sustainable.

To sumarize (and wrap up) my sermon I close with this advice - exercise at least 5 days a week. Don't feel as though you have to put in a long session each time; even 20 minutes a day is a great start and will make a big difference over time. Carve the time out of each day to do it; it needs to become a routine. Gradually increase duration and intensity when you feel you can but don't rush it. Make it fun!

Here`s a photo of Marta and Hana last weekend while we were out having fun and getting exercise.

Peace all.1376

[pwc51]

Here's my short version of Brian's super, detailed response!

My rheumy said exercise but do not exert.

My question is how do you know if you are exerting? One definition I have heard that it is OK so long as you can still hold a conversation.

In my case I started walking every day and built up over about a month from 15 minutes to one hour, covering about 3.5 to 4 miles over the hills. This was great therapy. I did the hour per day for about 5 months and I felt so much better as a result - unfortunately as soon as I reached medication maintained remission I was back at work full time and was not able to keep it up! Just now do the odd weekend walk.

[pberggren1]

So pwc51, do you feel better or worse since going back to work full time? What sort of work do you do?

[pwc51]

Hi Phil,

On the whole I am (wegs) OK since going back. I manage a global IT support team.

I should be travelling the globe to truly perform this role but, whilst I do short flights (1 hour), I have stopped the long haul flying whilst my immune system is heavily compromised. My deputies do most of the travel at present. My company has been great and most understanding.

There is a real benefit of being able to get back to work and that is that it can take a certain anount of your mind off the condition (it never goes away!) - I find, when not forced into action, that it is too easy to find an excuse not to do anything. I do get more tired than I did before and usually snooze on the sofa in the evening!

The one element I have to watch, particularly being back at work, is stress - I don't have an answer to this but seem somehow to have it generally under control compared to where it was. Maybe the medication helps?!

[Sangye]

It's great to hear how well you're doing, pwc!

[MCC]

Depends on how well you are doing and also what medication you're taking. I remember being told to take it easy whilst on high steroid doses as I can't remember the exact term that was used, but preds can cause your muscles to be weak and stretch easily. I ended up with painful throbbing in my foot because of this after walking too far and it lasted for days.

But apart from that, I'd just do as much excercise as I usually would (which isn't much cos I'm lazy haha!)

[NicShaf]

All right, my parents and I have been debating this point and I need some opinions and feelings on this subject to this particular question.

Can a wegener's patient do intense exercise such as cardio, strength training, martial arts, etc.? Do any of these exercises cause or can cause a possible relapse of the disease or do significant or considerable damage to the body of a wegener's patient?


I am told by my Rheumy to exercise as tolerated, but not to overdo it, especially while on medications. I walk and do yoga, but I haven't gotten back into running like I used to. I'm a little afraid to do so, I'm afraid to overdo it and cause a flare.
But, I have read may stories on here of people doing all sorts of things with Wegs, running marathons, climbing mountains...so it just depends on how you feel while doing it. Listen to your own body, and you should be ok.

[vdub]

My advice would be pretty much in line with everyone else. Don't over do it. I was really feeling great about a month ago and started to act normal, which included a lot of really hard work. Darn near killed myself and took over a week to recover. I would think a slow, gradual work up would be ok, but don't do anything that's going to stress you.

[GARYfromBOSTON]

I need to start some cardio but my energy level has been soooo low. I'm going to start with low minutes and try to power through.

[Runcolerun]

Start slow, and increase gradually. My doc said to go for whatever I could, but be smart about it. There's no reason, unless your body says no, to not go out and live your normal life.