PMR and Excersize - Experiment in Progress

Nick - unless my maths has gone wrong due to the fog of PMR - dropping from 12.5 to 10 mg is way over 10% recommended reduction, closer to 20% - hardly dead slow and steady?

John, thanks for the concern, It is exactly 20%.. you are correct. My rheumatologist is aggressive and blood tests look completely normal and I am completely symptom free..  I do have concerns about 20% reduction and that is why I am doing "dead slow and steady " transition process , so I alternate. per schedule, between 12.5 and 10mg. I started 3old 1new,... 2old 1new, etc and it will take me 16 days to completely transition from 12.5 to 10mg.. If I feel any negative changes, fatigue or return of PMR symptoms, I will change the plan.

Currently I dont have any PMR symptoms at all and I can exercise at decent level of 60-75% of my maximum heart rate. For example I can swim 1500m in about 35min without stopping. This is what I would call easy pace... and it is only 5 min off from my pre-PMR time.

Dan, I am still on prednisone, in transition from 12.5mg down to 10mg. I have had blood work done every 2 weeks since the beginning of the treatment and they are within normal range for the last month( CRP =0.1 and sed rate is 5 ). With no PMR symptoms, my rheumatologist decided to drop to 10mg during the last visit. From there on, reduction will be more careful ( 1mg or less). His target is to get me as quickly as possible below 10, perhaps 7-9 range and stay there for longer time.

I contribute faster recovery to moderate exercise. I use religiously heart rate meter and  limit my level of intensity to "recovery zone". My target rate is 60- 70% of my max HR.  I never venture into endurance or speed/power zone, which are in 80-95% of the max HR. 

(My) theory behind this is that inflammation of the blood vessels (capillaries) is restricting circulation, and it is my believe that recovery zone excersize supplies much needed fresh blood to the muscles providing them with nutrients and removing waste products from them.

Nick, I,m glad you brought up this theory as it makes sense for me too. I've found that if I go for a brisk 1/2 hour walk (or longer) I feel better - less aches and fatigue. But if I do other forms of exercise that don't increase my heart rate, like gardening or walking slowing, then there seems to be hardly any affect on my aches/fatigue. 

Your theory clearly laid out is suddenly clarifying what my muddled Pred brain has been wondering about - so thanks for your comments!

Any level of exercise is better then none  , so even your gardening and yard work counts!. Your heart pumps more blood and that is good for muscles. There is a lot written in sports literature on different zone of intensity and training.  Activity in Recovery zone helps muscle recovery ,as name implies.  Calculate your max HR as 220-age. So if you are 60, your max HR is about 160Bpm. Recovery zone for you would be 80 - 100, maybe 110Bpm... If you excide that level, you are in endurance zone and stress to your muscle is higher and this will induce some inflammation.  Going to 85-95% of max will definitely cause tears in the muscle, pain and inflammation. For healthy athlete, muscles recover and repair and becomes stronger. For us (with PMR) it is best to stay away from high intensity activity.

Nick, thank you for the calculations....it saves me looking up the formula. Sometimes I go to a fitness center and can therefore check my pulse on the treadmill and bikes but I kept forgetting to check the formula to see if my heart rate in the 90s was ok....and now I know that it is. 

I appreciate your posts about exercise as I want to be active but not over do it and although you are way more active than I can be, your posts provide me info to consider. 

Hi Nick, I haven't regulated my effort at all, and haven't much noticed a difference if I was even taxing myself to up near 100%, really kicking out all I had.

My PMR symptoms don't seem to affect my working muscles at all.  I have more like a bursitis condition that causes joiont pain, limiting my agility off the bike as well as my range of motion in particular.

Being on even a very low dose of pred prevents me from having post-training muscle soreness of the type that would previously prevent me from walking down stairs after my hardest riding workouts. It also prevents me from having any of the seasonal allergies that I used to suffer from.

I'm not sure what is requiring me to use a slightly higher 4mg to control a couple of specific, localized bursitis sites right now, but the slightly-higher dose has greatly increased my adrenal response to coffee and given me a lot more energy.

I am making real progress with my weight lifting efforts, and just yesterday managed to do my first pull-up sets in several years, due in part to that extra energy. I am feeling celebratory about it.

glad that I can help in any way. I have learned from people from this site so much, that I felt I should try to give something back in return.

Dan,

Let me congratulate on your improvements in weight lifting. It must feel good to progress in spite of PMR!  I have not started weights yet.. In time I will...

I carefully read all your comments, since you are almost 2 years ahead of me in PMR treatment.  You are the one that encouraged me to try to add workouts to my "just walking" recovery.  But I am more careful as far as intensity of the exercise.  Even before PMR, my training was done with 80/20 split - 80% at  recovery level the other 20% was endurance and speed work. I found that gets me faster in shape then going all out all the time. I use HR monitor during training and download data to PC after for analysis.  With 3 sports to train in, I could not afford to do all out all the time.  In fact that was usually a recipe for injury.

For now I am just doing recovery level exercise and if I exceed that level it is just for short time because I am  going up the hill that pushes my HR above set limit. 

To give you approximate picture, my absolute max HR is 160 ( this applies to running only). For biking, my max HR is 150. My resting HR used to be below 40, but now is in mid to high 40s.  While biking I try to be in 105-120 range.

I had no alergy or any reason to stay on pred ( other then PMR) , so I am looking forward to the day I stop taking it.  At the moment I am transitioning to 10mg and hope that it does not backfire on me. It has been only ~2 months since I started treatment at 15mg. Will see, only time will tell.

 

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.

 

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.

Hello Dan,

What time at night do you take the Pred? Did you experiment with different times?

Thanks

Kathy

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

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

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?

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.