PMR and Excersize - Experiment in Progress

Congratulations to you, Nick! Were I you, I would at this time begin the "Slow-slow-almost-stop" method of reducing, now that you are at the low dose of 5 mg.

Good luck, and keep riding!

Barbara

That's great progress, Nick!  Yours and my condition both have responded dramatically to exercise, mine to diet as well, and dramatically so.

I recall having been able to get strong again, after five months of treatment and while still at 10mg/day of pred.

I endured recurring symptoms as I tapered down from 10mg however, eventually spending almost two years at around 5mg, but with a seasonal sharp reduction to 3mg or so due to racing season activities apparently.

Lately I've been at 2mg/day, taken each evening at 6pm. This after almost three years, eating like a bird so to speak (actually just leaving a little on the plate these days, worth two pounds or so on the scale). So far so good, not expecting to have to order any more meds at this point, rheumy is on board with my diet and activities, he says that dietary restriction has been known for many years to sharply reduce systemic inflammatory response.

The litereature on PMR often refers to the "self-regulating" characteristic of PMR, meaning I suppose that the disease does not tend to proceed to the point killing the patient(?).  I equate this to one's tendency to eat less when pmr symptoms progress to the point of making one feel sick, and I've been there when unmedicated, lost 15 pounds within three months, and I've noticed that I am still alive.

For those others who have dealt with pmr unmedicated for some time, did weight loss occur prior to taking pred?

I caution that perhaps pred, while easing symptoms of pmr, seemingly de-regulates this regulatory system, which admittedly does not perform strongly enough to make patients live comfortably or even fully functionally.

Controlled research studies into this would seem to be worthwhile, though without the drug companies making a quick buck who would pay for such studies? I guess I will have to call my own experimentation an independent research study for now.

And Nick, I fully trust that you were not riding one of those new electric-powered bikes, LOL!

Thanks Barbara... I am using a variation of Dead Slow and Nearly Stop method, and it will take me about 5 weeks to taper from 5mg to 4.5mg

Thank you Dan. You are few years ahead of me in this journey of PMR and I am looking for pointers how to handle this level of 5mg  with consideration to exercise.  Although I was for most part pain-free before, when I reduced to 5mg, it feels a bit different. Reduction went smooth, but I can feel muscles complaining when I bike uphill, at least in the first 10-15 minutes.  Although I am starting 5-->4.5mg taper, I question if it is better to stay at 5mg for a bit longer.  I use  ~5week transition and I have waited 3 weeks after. 

 

Also, would you please expand on dietary restrictions that you use. I don't understand the timeline between meals and exercise that you call " accelerated fasting"? Usually one needs  15+ hours of fasting to deplete sugar from liver stores.  My weight stayed the same ( within 3-5lb) for the last year, although I would not miss a few pounds if I lost it.

 

on the bike.. I still use my old Cannondale bike, although it just got refreshed with new wheels - rims/hubs/etc since the old one were worn out from braking.

"...would you please expand on dietary restrictions that you use. I don't understand the timeline between meals and exercise that you call " accelerated fasting"? Usually one needs  15+ hours of fasting to deplete sugar from liver stores."

When I referred to accelerated fasting, I simply was referring to the hours on the bike, since the rate of calorie burn is so high.

As for my dietary restriction, it's just a sort of vigilance as to not eating more than I need to not feel hungry until the next meal. It includes things like not having a sweet drink with a meal, and not having much of a dessert when the meal was relatively large. I also cut out snacking when I can comfortably wait until the next meal, but all added up my weight is still close to what it was, there is just a couple of pounds variation from one week to the next. I used to weigh about 155lb before pmr caused me to lose about 15lbs, and I just haven't gained any of it back.

I'm thinking that my liver spends a lot less time these days at or near it's storage limit where an insulin response becomes necessary, and yet I don't feel unusually hungry because of this.  Raised insulin level is associated with increased inflammatory response, so my pmr seems strongly related to this sort of thing.

Hi Karen, I too had started on pred in December last year. First strong symptoms showed up in November and it took 1 month and 3 different doctors before it was diagnosed ( actually 3rd doctor  suspected PMR and sent me to rheumatologist, which diagonsed it ).

I know about shortness of breath. I had it in the begining. Now I am not sure how your overall health is, and dont want you to try something that might hurt you, but here is what worked for me.  Again make sure that you dont have any cardiovascular issues, before attempting the foillowing:

Shortness of breath comes from restrictions in transport of oxigen from your lungs to your muscles. It sets in partually because of our inactivity and partuaally because of high dose of pred.  Fortunatelly, it can be overcomed  thru training.  You already do treadmill "most days" for 30-40 minutes, which is great.  Now, once a week, after you are wormed up well ( say after 25 minutes), increase intensity to the point that you start breathing heavier and do that for shor period of time 2-5 minutes. Then go back to same speed as in the begining, to cool down.  What will happen is that your body will, after several weeks, start to adopt to new level of exercise and you will be able to do more without loosing your breath. Do it, only once a week, because recovery is important part of getting stronger.

Maybe in a few months you will be hiking!

HI Nick,

i start breathing heavier with normal exertion and have to stop. I also have restrictive lung disease from surgically reduced scoliosis which left me with chest deformity. I have perfusion/ ventilation mismatch. With this I was able to still hike in the Alps. Six years ago,, while preparing my diseased mom's home for sale, we had her bedroom floor sealed due to persistent urine odors from pets. I was only in the closed up home for a few minutes but the fumes were so strong I quickly left. A week later I was at the Pulmonologist for shortness of breath. Started on inhalers. It's called reactive airway disease but pred and PMR seemed to make it unmanageable. Cardiac was ruled out. I do a breathing program called Buteyko which helps reduce hyperventilation. 

Interestingly yesterday was a good day where I had minimal breathlessness with my shopping duties. I use inhalers though.

I add my chest muscles are weak from pred and being cut through from multiple surgeries. 

I will keep trying to figure out workarounds.

thanks🤔

I meant deceased mom.

I am sorry to hear that Karen. Keep up with whatever you are doing, and let's hope that one day, when PMR burns out, you will be able to hike as before.

Hi Renee, feel free to ask any question after reading my "diary" on exercise.

If it's the PMR that is making you tired, I would go back to 5mg and get back up to speed so to speak.

The reason I say this is because when I got my energy and activity level back up, it wasn't long before I could do 4mg days, so was able to make this bigger 1mg step down when I felt better and had got my activity level back up.

I did spend a very long time hanging around 5mg, a year or so. It was the Fall season bike racing and training that jump-started some big reductions two years in a row, I got down to 3mg by last Winter, and am at 2mg this winter.  In between I had to go back up to 4mg for many months, until the Fall bike racing activities fixed my metabolism.

Have you undertaken any dietary changes of late?  Or is it just the balance of diet and exercise that has changed?

Any time that I feel a flare coming on, I make sure to effect a caloric deficit with my diet/exercise regime, which seems to quickly ease my symptoms at any given dosage level.

Thanks Dan! I am not on any special diet. I eat whatever the rest of the family eats.  I think small weight gain is a result of less exercise then usual. 

As far as pred, maybe 5mg is the minimal dose to handle PMR symptoms at this point in time and any further reduction may cause flare. 

And 5 mg is also the level at which the adrenal glands have to start doing their own heavy lifting again, a sticking point for many.  They need time, even if the PMR doesn't.