PMR and Excersize - Experiment in Progress

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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.

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  • Posted

    Week #8 - Feb 01-07

    I continued transition from 12.5-->10mg dose. I am using slow method that start with 3 day old dose/1 day new...and it takes 16 days to completely switch. Here is the copy of the schedule.  It seems to be working.

                                .......

    0   1/27/2016    day old dose

    1    1/28/2016    day new dose

    2    1/29/2016    day old dose

    3    1/30/2016    day old dose

    4    1/31/2016    day old dose

    5    2/1/2016    day new dose

    6    2/2/2016    day old dose

    7    2/3/2016    day old dose

    8    2/4/2016    day new dose

    9    2/5/2016    day old dose

    10    2/6/2016    day new dose

    11    2/7/2016    day new dose  <-- I am here now

    12    2/8/2016    day old dose

    13    2/9/2016    day new dose

    14    2/10/2016    day new dose

    15    2/11/2016    day new dose

    16    2/12/2016    day old dose

    17    2/13/2016    day new dose ....

    I followed usual routine of 5-7Km walks every day and 2 good workouts/week,  2Km swim( added 0.5Km) on Tuesday and 10K mountain biking on Thursday .

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  • Posted

    Week #9 - Feb 08-14

    I am now at 10mg dose. I have increased exercise from 2x per week to 3x per week, two mountain bike rides and one swim which burns about 2600 cal. My  daily walks are about 350 cal/day, so my total weekly is close to 5000 cal/week.  Weight has stabilized at about 1-2Kg below pre-PMR level. 

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

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    • Posted

      Great to hear that your 10mg dosage is so far holding up, which seems to validate your large-step reductions to date.

      How are your arms/shoulders holding up to the mountain-biking?

      I am thinking that 2x/week would probably be enough to maintain the needed strength level to allow somewhat aggressive riding, and you did say that you presently have no PMR symptoms. I wish that I could say the same!

      A couple of weeks of cold, wet weather had me bumping my own dosage up a bit (to 4mg/day) to maintain a tolerable level of symptoms.

      My symptoms continue to vary, with a different region of my body determining my minimum dosage each week or so. We've had good weather this week, and I am now comfortable using a lower 3.5mg/day over the last several days.

      I am able to use the smallest dose if I take the entire dose in the late evening, versus any morning dosage!

      I came to this realization by taking my minimal daily dose only when symptoms seemed to actually require it, and it turned out that the evening dosage geve me the greatest interval of relief (a full 24 hours) such that the lower 3.5mg nightly dose is proving adequate at preventing localized flare-up of any intolerable symptoms.

      Good luck keeping to your reduction schedule. Such a low level of symptoms is something to be thankful for.

       

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    • Posted

      I didn't go into details about biking in weekly report. I have changed the intensity; most of my riding I am about 120bpm and then on the last hill before the top I move my target to 135-140bpm for about 4-5 min. This gets me into endurance zone, simulating race condition (mymax HR is 150 for biking).  I also extended my ride by adding 2km. 

      I have no problem with shoulders while biking, or swimming. I do have weakness in shoulders if I try to lift something heavy above my head ( say putting a box onto the upper shelf) that I still need to work on.

      I am still taking pred in 2 doses, one very late at night ( between 1-2AM) and one in the morning, about 8AM. This seems to work the best for my daily cycle.  Weather doesn't seem to impact me at this time, although winters are pretty mild here.

      Sorry to hear that you are bumping into lower dose limit. It probably is a struggle to restart your own cortisol production at that level.  The more I read on this site, the more I realized that each one of us has their own version of PMR and their own battle to fight.  Patients and perseverance is needed to survive it.

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    • Posted

      Kassie, there are 2 peaks in cytokines - 4am and 9am. If you are taking non-coated pred, then ideally you want to take them 2hrs before the cytokines peaks, so 2AM and 7AM.  Obviously that is not realistic, so take 1/2 dose as late as possible in the evening  and the other half when you wake up
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    • Posted

      Thanks Nick, Sorry I should have addresed the question to you. I have tried splitting the dose before but took the evening dose at 8pm and ran into a few pain problems. I am usually awake at midnight so it won't be a problem to take the pred later.The old pred insomnia. GRRR. I am taking 10 mgms at present.  Interestingly enough I had blood tests done yesterday CRP is 9, ESR is 50. Quite surprised at the ESR as it has been normal up until now and the CRP has been above normal every time.

      Thanks for your input and the work you have put in,

      Cheers

      Kathy

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    • Posted

      Everyone is different... I started with morning first. Later I talked to a doctor and he agreed that it was better to split the dose because I work relatively long day ( and take a nap in the afternoon).  Through experimentation and guided by reading here and some other studies, I have found out that late night is working for me... and second dose I always took in the morning. 

      When did you taper to 10mg? ( I just did, so I am curious). Do you have any symptoms since your blood test indicates that something is going on?

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    • Posted

      Well, my body is complaining to high intensity biking.. I have some muscle pain in quads and hamstrings and my hamstrings were cramping yesterday morning... I need to drop back to recovery  ride next time and wait until legs recover completely... At first I was concern if this is related to reduced dose, but symptoms are gone after 2 days, so it must be related to last ride, where I pushed to 85-90% of the max HR for just 5 min or so.
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  • 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.

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  • 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.

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    • 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.

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    • 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. 
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  • 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.

     

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    • 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.  
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    • 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.
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    • 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.

       

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    • 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.

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    • 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 ...
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    • 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.
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    • Posted

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