PMR and Excersize - Experiment in Progress

I sure hope that works as well as it sounds!

I'm stuck at 2mg for now, and will be glad to simply hold it there for a good while after needing 4mg for so many months.

I still have a variety of minor symptoms, a nagging left shoulder that is slowly getting better, and some recurrance of soreness about the soles of my feet. Also ribcage area, but thankfully very litle fatigue.

I did not have any major pain, and could tolerate it, but it was not going away and that concerned me. It was only 0.5mg reduction and I asked myself if it was worth trouble, and the answer was obviously no.

Reading about your nags and soreness and I think PMR finds weak spots in out body and settles in.  I usually try to pay special attention to those areas in warm-up and stretching. Seems to help as you loosen them up.

In my case, luckily it's starting to look like pmr has nearly run out of new places in my body to flare, and so each location's symptom has become a familiar routine. I can now more readily recognize any of the many usual flaring symptoms.

You're right about taking it easy when necessary, especially (for me) that I don't re-aggravate the bursitis(?) in my shoulder when I put on my heavy shirt first thing every morning.  I have switched to putting my afflicted left-side arm into a shirt sleeve first, and also am choosing a quite-larger button-up shirt to prevent me having to aggravate the inflamed tissues, ...and it's finally getting better, even as I am still doing pull-ups later in the morning. And I am slowly getting better at not aggravating the same tissues while turning in bed and/or when lifting the blankets into position.  It's a long list of tricks that will fnally allow my shoulder to recover, but basically it's just not doing anything that causes pain.

I am also finding that jogging/running a little every day (preferably early in the day) is keeping me from having to run and walk like a much older man.

I did recently take a "supplementary" 1mg tablet in the morning, ahead of my regularly scheduled 2mg at 6pm, this in preparation for a late-morning bike race. I managed to achieve my best placing during that last official race of the CX season last weekend, and by 6pm I only bothered to take the remaining 1mg of my normal dose.  All has been normal/manageable since then!

I'd been wondering how you were doing of late, no news isn't the worst news I guess.

I myself still bounce around, unsurprisingly I have re-visited the 5mg range many times and for lengthy durations.

I had three good months this winter at 1.75g(!!), a dosage that I never quite achieved before.  But just over the last mnth or so I have moved up to 6mg/day, all because of an over-use of my pmr-afflicted right arm/shoulder area.  Such are the work demands of owning rural property, but I am resting it for the last week and very slowly seeing improvement.

I will stay at 6mg until this passes, I have confidence in seeing a big reduction in the fall however. In the mean time, over 15 months time, I have regained my ability to run 5-8 miles at an 11min/mile pace, enabled in small part by my recent higher pred dosage.  And with my higher pred dosage, my energy level is almost "through the roof", the best it's been since my diagnosis 3+ years ago. I feel good and my cycling speed/endurance feels almost like during the CX racing season five years ago!

Thanks for all of your updates, and be well!  Patience is a virtue with pmr, but it seems we should not under-medicate ourselves.

Yes, patience is necessary to get thru all of this.  I am glad that you are doing fine. Few mg up or down is not as important as it is regaining as "normal" lifestyle as we can.  I have tried running, but did not end well.  My knees did not like it and for a week or so I had hard time even walking. I made very big mistake of not starting gradually and payed for it. "Mind over body" is a hazardeous activity.  However mountain biking and swimming was not impacted, so my endurance stayed fine.

I live in a city, but there are still some projects that test my recovery.  Few weeks ago I needed to redo section of the driveway, which involved removing large stone blocks, 50+ lb each.  It took better part of the day to rebuild it and tested my arms and back, but I survived.  So strength is comming back.

Part of the strugle is that we are not getting any younger and it is masked by PMR, so one doesnt' know what is more limmiting. But hey, doing our best is all we can do.  I still remomber first time I read what you are doing at the beginning of my PMR journey...It gave me a kick-start in my recovery. "If Dan can do it, so can I" - I dold myself.

Nick, I'm glad that you survived your construction project.

Last summer, I had to replace a huge, 20-ft-long beam along my front deck, thankfully only a few feet off the ground.  I played it smart and took my time, used leverage and all that to ease the load on my limbs and back.

I noticed that as a result of my frequent short runs that my legs just became normal in terms of being able to work and squat down. I guess it was gradual, I didn't notice it but realize now what a big improvement has occurred. My rib cage also stopped hurting, so now it is just the area around my upper ams and shoulder that lingers and makes changing my shirt difficult. I think it is strictly in the synovia and bursae, the muscles seem fine.

I just got my third set of bloods taken since my condition started, so that's less than one full test per year. All my bloods are in normal range now, and after being down over 15lbs for three full years, I have finally put six pounds back on just over the last few months, even before I raised my pred dosage. I expect to put on a few more, especially now.

We were all nearly shocked by your initial, rapid progress in reducing your pred dosage, but 5mg can be a most stubborn level to get below for good.  Your dosage needs will of course continue to fluctuate over time, and eventually most of us will simply reach a point in time where pred is no longer needed.

Oh, and I still feel that I see the biggest improvements when I get in a brisk daily morning bike ride of 2+ hours.

Congratulations Tracey, on completing your 10k!

I may try one of those, it would be the first one for me in 30 years.  I have done a local duathlon (run/bike) a few times several years ago, but with zero running "training" beforehand, I was always dead-last when I arrived at my bicycle so had to play catch-up.

I would always get leg cramps toward the end of that riding section, due to my legs not being readied for the running part which left it's mark.

I sometimes get random leg cramps (usually while sleeping) that result from my digestion not working as freely while lying down, so will have to get up and move around for ten minutes before returning to bed.  Somehow, pmr had made this much worse, and more frequent, but has seldom been a problem lately since my pmr years seem mostly behind me. If I am still awake when this happens, I will get "restless legs" as a symptom before any cramps start.

I've also had multiple leg muscles cramp up rather suddenly, while running or while riding a bike, after drinking soda at a rest stop, so again there is some kind of digestive distension issue involved, severely obstructing blood flow to my legs. I will stop and maybe writhe around for a few minutes then it clears right up, and my muscles then feel fresh, as if I hadn't even ridden or run far or for too long.

I remember getting sunburned quickly one afternoon last year in the spring, but was on only 5mg/day of pred at the time.

WOW. That is great Tracy. How long did you prep for 10K?  If the worst think that you are complaining about is sun burn... you must be in a great shape . You go girl!

My wife used to run and she is a "natural".  Last time we ran 10K she left me in a dust ( that was 15 years ago or so). I never was fast runner and it was always the most difficult part of triathlon for me.

Thanks, I don't run fast these days and some runs hurt and some hurt for couple of weeks after. 10k seems to be a reasonable distance as the long distance runs seem to be no longer manageable.Training consists of 3 sessions of 45 mins of hard hit sessions with a couple of runs. My meds at the moment seemto keep the pmr under control.well done on doing triathlons , the open water swimming would be my own personal dislike and I'm not a strong swimmer.

Actually he's more correct than you want him to be.  Do what you can which is comfortable, enough to maintain a level of fitness but not as much as you would have done before diagnosis.  You are actually in these early days a bit more at risk of injury, so it's wise to treat yourself with some kindness.  If you had a visible injury, like a broken or sprained limb, or a bout of the flu, you'd be slowing down.  PMR/GCA is no different, we just can't see that we're ill.  But the body needs time to heal.

There are success stories from people who were practically wheelchair bound getting their fitness back up, skiing, cycling, running, doing very much what they used to do.  But they were not able to rebound instantly.  It took time.  

A Grook by Piet Hein:

T.T.T.

Put up in a place

where it's easy to see

the cryptic admonishment

T.T.T.

When you feel how depressingly

slowly you climb,

it's well to remember that

Things Take Time.

Hi Marcia,

Glad you found my old posts. It shows my attempt to regain fitness that  I lost with PMR.

There are some general rules, but keep in mind that we are all different - for many reasons: we were different before PMR, we have different "baggage", and also we may have different variant of PMR/GCA.  Here is what I learned:

- Start as soon as possible, but start SLOW. Start with activities that you have done before and feel comfortable. Keep in mind that it may take months to regain your old level of fitness, but it CAN be done.

- PMR does not like if you sit or lay around. Create new habit that will keep you moving at least 3 times a day. Make it part of your usual schedule. For me is walking a dog. I take walks 3x a day - total 5-6Km. During the morning walk I stop at the playground and do stretching for 15 min or so. I focus on area impacted with PMR, my shoulders and neck as well as hips and lower back.

- I do 3-4x a week endurance exercise, and for me that is mountain biking and swimming. I picked activities that I like and I can control the intensity.  I use HR monitor to gauge how hard am I working and keep my heart rate at 60-70% of max. During 60-80 minutes of each session, I increase intensity to much higher level (80-90% max) for a very short time, usually 5-10 min. This mimics interval training and over time leads to improving overall endurance. For the record, I was able to get back to pre-PMR levels of endurance within one year. It is really important to listen to your body and progress slow.

On the last note, I did not start running after getting PMR for a long time, and when I tried to run, I ended up with injury that I am currently going to rehab for. I recon I waited too long and then was not careful to start slow to regain muscle strength.

Why all this warnings? Prednisone changes protein metabolism and impedes muscle recovery after training. Moderate exercise  helps recovery, but strenuous exercise is not recommended. It can lead to muscle loss, because rebuilding of damaged muscle does not happened - thanks to prednisone. Although I regain endurance to pre-PMR levels, I have lost muscle strength. That is my next challenge, not that I am at lower dose of pred.