Exercise is so important

Thanks for starting the group in Strava. I'll join later today after I complete my walk. I have one request - could you change the name of the group to "Beating POLYMYALGIA and GCA"? I have both conditions.

I haven't posted anything on Strava in quite a while. I walk, jog, and hike for exercise. I'm 71 now, but when I was in my late 40s and early 50s I was a national class age group runner in the US. I developed my first autoimmune disease, Hashimoto's hypothyroidism, in my 50s, and that impacted my ability to train hard. But I still love to run and train. I look forward to seeing what other people with our diseases are doing to stay healthy.

I'm currently at 5 mg prednisone per day and take weekly Actemra injections. I feel better with every step down on the prednisone.

Good luck with your challenges!

Done

I agree with you about continuing endurance exercise. What didn't work for me was long term prednisone and being told to "take things easy" and not to overdo it.

I lost all my endurance and I don't think PMR made me lose it. In retrospect, I'm convinced it was a low cortisol level after long term prednisone use. I didn't have "overwhelming fatigue" at the start of PMR ... it was just overwhelming pain.

Prednisone energized me at first but then it was a steady decline. PMR pain decreased but then I had no energy the longer I stayed on Prednisone.

Now that I'm off Prednisone my endurance is improving. PMR is well controlled by Actemra but I still have some pain that is tolerable. The pain doesn't prevent me from exercising. My rheumatolgist says I still have PMR and probably it will never completely go away at this stage.

Exercise makes me feel much better in terms of my overall health and well being. My quality of life is improving. I would like to join the group too but I need to figure out what STRAVA is first.

Would you be interested in posting your invite to the PMRGCAuk forum? I follow that group, and I know there are some active people that might be interested in your group. I could post the information there if you're interested and aren't a member.

Can you do it please.
Thanks

Ok, it's done.

I use a Garmin watch with GPS for my activities. It uploads the data to the Garmin Connect website and also to Strava. But you can also use smart phones and bike computers.

I use an Apple Watch and the health data app actually shows when PMR hit last year and my recovery, quite interesting. My walking asymmetry went from 0%-85% the day my hip went wrong last month, back to 0% again now, well most of the time. My cardio fitness has taken a long time to get back to High, 27.2 VO2 max. It should be higher but I think the Pred is still having its way. Will be interesting to see how long it takes to get into the 30’s once I have finished Pred.

That's interesting about your VO2 max. I'm very much like you in that I lost a lot of fitness over the past couple of years of PMR and GCA and treatment. My fitness is coming back very slowly due to a lot of issues with mild muscle strains. My VO2 max right now is ~26-27. A million years ago when I was running at my peak it was 64.

What is a good device these days? I have a smart watch but I don't use it anymore. It mostly counted my steps and said how well I slept. I knew that I wasn't sleeping well at night while I slept too much after any exercise.

My steps were a joke because I was using a rollator and I wasn't getting credit for any steps. I could sit in a chair and wave my arm back and forth and get credit for a thousand steps in no time at all.

I mostly do aquacise now. I would like to get some credit for doing aquacise but I don't know how water resistant those smart watches are.