1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

PMR and Excersize - Experiment in Progress

Posted , 40 users are following.

nick67069
nick67069

Hi Everyone!

In search for information about PMR I have come acress this site with lots of information and links.  I have learne a lot and in return I would like to contribute about the topic of PMR and excersize....

Background: I am 66 years old and have suffered first attack in mid November 2015... I have been fairly active person and have done some triathlon in the past, so not being able to get out of the bed on my own was pretty shocking to me... It took about one month to diagnose PMR and I started medication (prednisone) at 15mg/day mid December. 

If there is an interest, I would like to post about the progress in recovery, with special attention to excersize. I am seeng specialist every 2 weeks and complete blood work is done to monitor inflamation caused by PMR.

I would like to post what I have done thus far and future progress in (hopefully) sucessful recovery.  Please let me know if there is enough interest in the subject.

14 likes, 226 replies

226 Replies

Prev Next
  • nick67069
    nick67069

    Posted

    Week #10 - Feb 15-21

    No change from last week.  Exercise 3x per week, two mountain bike rides and one swim. I have lowered the intensity this week to recover from previous week.  Good news is that symptoms are going away, so I know it is not PMR, but me pushing too hard.

    I am feeling good and recovery seems to be going well with virtually no PMR symptoms.

  • nick67069
    nick67069

    Posted

    After monthly checkup and normal blood test, I am starting taper from 10mg-->9mg as of tomorrow, Feb 25. I am also off antibiotics and PPI.

    My Na and K levels are fine ( according to blood test, so I am still puzzled why I have muscle cramps.

    • dan38655
      dan38655 nick67069

      Posted

      Nick, I've had a lot of shin cramping episodes since pmr set in, so perhaps it's vasculitis affecting the muscles, or it could be your response to too much exercise for your current fitness level?

      Leg cramps can also result from digestive tract distension, especially while laying down.

    • nick67069
      nick67069 dan38655

      Posted

      Dan, thanks for the comments... It doesnt' seem to be anything serious and it is infrequent, usually mornings before I get up. I have already moderated my training intensity and now ( hopefully) 2 out of 3 meds are gone and my stomach will have a chance to recover. 
  • nick67069
    nick67069

    Posted

    Week #11 - Feb 22-28

    Same as last week.  Exercise 3x per week, two mountain bike rides and one swim. I am back on higher intensity this week.  What I have noticed is that for the same effort my HR rate is lower, so I can push harder.  Finally exercise is working...Improvement!

    This week I had my PMR monthly checkup. All tests look good, I am off from antibiotics and PPI medication and within 2 days my stomach troubles were gone. I have also started reduction from 10-->9mg on prednisone. For this I am using "shorter" version of "dead slow.." 3 old dose/1 new...etc , basically 16 day transition.

     

    • Anhaga
      Anhaga nick67069

      Posted

      I've tweaked dead slow as well.  I use the 4 day start stop time, although after Christmas took a six days at beginning of transition from 6-7.  But main thing is I start with a .5 mg reduction, and if feeling well enough (and I have been) drop to full mg halfway through the taper.  So at the point where you would be at two days old dose, two days new dose, I drop a full mg for the two days new dose, and the old dose becomes .5 mg lower .  (Example - two days old dose 7 mg, one day new dose, 6.5 mg, two days old dose 7 mg, two days new dose 6 mg, one day new dose 6.5 mg...etc. to end of taper. Then about nine days at 6 mg and continue with next taper.  It takes a month, but you might find it useful as you get to lower doses.  
    • Oregonjohn-UK
      Oregonjohn-UK Anhaga

      Posted

      Overall you are still reducing slowly.  I follow a similar system based on the DSNS method that fits in with my schedule, gets a little bit more difficult as you get to low figures - I'm at 3.25 mg.  It's the old answer, if you 'read/listen' to your own body and not have a mind set of relentlessly trying to reach zero you can make it.
    • nick67069
      nick67069 Anhaga

      Posted

      Thanks for the advice.  At this level 1mg is still within 10% reduction.  It will be more challenging as I approach 5-7mg range and lower.  One thing I am not certain. Based on Bristol study, they kept patients at 10mg for long time before reducing further. Do we need to stay at certain level to make immune system "forget" about PMR? Or is better to follow comfortable reduction and try to find minimum prednisone level (if not zero) ?  This is a question for anyone.  Any thoughts would be appreciated.

       

    • julian.
      julian. nick67069

      Posted

      in the early days I was interested in minimising the pred to reduce the side effects while sufficiently reducing the polly whatsit symptoms. So I tolerated a bit of discomfort / stiffness / pain. Mindful of fatigue, mental effects, and pacing required to get through the day.

      Now at 3mg/day my strategy has changed to slowly / imperceptably reduce the pred while hopefully avoiding flares and other speed bumps. I have few pmr symptoms with side effects at low / not noticeable level. Physically and mentally I'm functioning reasonably normally ... I think. Achilles tendon has just slowed me a bit, hopefully less than a few weeks. Last reduction was from 3.5 to 3mg a week ago. Previous from 4 to 3.5mg about a month previously.

    • julian.
      julian.

      Posted

      PS I'm certain my aim is zero, just less of a hurry than earlier.
    • nick67069
      nick67069 julian.

      Posted

      I am not in a hurry either, but would like to optimize "trip" to zero level. The last thing I want to do is rush to reduce and cause flares ...
    • Anhaga
      Anhaga nick67069

      Posted

      Hi Nick. There is probably a lot to be said for the Bristol method IF PMR is the only thing to be concerned about.  In my case I've developed some of the more concerning side effects of pred and any temptation to slow down my reduction is met with the answer do I really want full blown diabetes, do I want my bones to thin even more, do I want full blown glaucoma, can I function any better than I did with PMR if my muscles continue to atrophy?  (And before everyone jumps on me I AM doing everything humanly possible to mitigate these side effects.)  You know, I'd take that moonface everyone complains about over these side effects!  So as long as the (at present barely perceptible) symptoms of PMR do not get significantly worse, I'm going to continue to reduce slowly and steadily.
    • Anhaga
      Anhaga

      Posted

      Oops, please read at end - two days new dose 6 mg, one day OLD dose 6.5 etc).
  • nick67069
    nick67069

    Posted

    So here is what I did in February:

    - walked 163Km in 37hr: 30min and burned 11,620 cal

    - biked in the mountain 75.6Km in 7hr:09min burned 5,560 cal

    - and swam 7.45Km in 2hr :52min and burned 2,244 cal

    Total cals burned is 19,424

    if interested,my daily workouts are posted at site called endomondo (you can google it) and then add backslash- users-backslash- 26478710-backslash- workouts.  Type only words in bold and separate them with "/ " =backslash

     

    • Tastyron
      Tastyron nick67069

      Posted

      G'day Nick.

      Just had a look at some of your workouts for February. Do you ever sleep man?wink

      My diary on sportstracker comes up with a total of 70 km for February but I never turn on the app for anything under a couple of km. When I see the rhuemy I park nearly a km away (rather than pay the hospital parking fee, tight as, me) so that doesn't get counted plus walking around looking after the girls horses is not added either. But it's a great thing to keep track of what we do isn't it. I can see improvements in milage and speed and frequency as well. Keep up the good work.

      Ron

    • nick67069
      nick67069 Tastyron

      Posted

      cool I always walked at least 2 times a day before PMR (my dog is the reason for  that) I did exercise more before the PMR, so overall I was just as active.  I think the best is to find a reason to be active  and include that in daily schedule. Small walks of 3/4 miles ( 1Km) 3 times a day add up.  Turn sporttracker on even for "short" walks and you will be pleasantly surprised.
Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.