Best way to taper Pred to "help" PMR burn-out

I think whatever is causing inflammation ("in-flame-ation"" must be caused by burning . Kidding on a side, what causes PMR is not known, but the effects are that immune system attacks our own body by mistake.  When we start pred it does not stop PMR, it just negates all the effects ( at proper dose). I see pred as a cleaning agent, that cleans up the mess that PMR made.

In that context, PMR burnout means ( to me) that immune system over time stops attacking our own body. The question was if there is any interaction or impact of taper on that process and if the re-training of the immune system is impacted in any negative way if we reduce pred dose down into "physiological zone" ( less then 7.5mg) or has no impact at all or maybe even helps in reducing PMR activity?

I was well aware of the mechanism by which prednisone works, simply because I've had a similar experience using cortisone for itchy skin.  My doctor prescribed an ointment containing twice the hydrocortisone of the OTC version.  Cleared up the skin like magic.  But of course I relapsed and it was worse within a couple of days of discontinuing its use.  It was my own trial and error that led me to understand that I couldn't just stop using this product, I had to introduce something else to take its place, and taper (didn't know that was what I was doing) the use of the cortisone.  So I tried a number of things, even went to a naturopath for help (she didn't) but eventually discovered that an oil made from a well known plant that I am not allowed to name on this forum seemed to do the trick.  I also found a rather expensive cream at the drugstore, which contains shea butter, and that also helped, and I still use it.  Occasionally for a while I had to use the much milder OTC cortisone but eventually I no longer needed it.  I'd really like to find the product which would enable me to properly and safely taper off prednisone, a product that I could use for the rest of my life to prevent recurrence of PMR.  

It is a bit of a misnomer to say it 'burns itself out'.

A fire will burn itself out if starved of oxygen.

PMR's aches and pains are caused by not enough oxygen being transported by the blood cells, thus depriving them of oxygen. What they don't know is how or why the body does that therefore it is classed as  auto-immune illness - one of 800.

That is how it was explained to me - so it goes into 'remission'.

 

I always perceived the pain as like that after unaccustomed exercise (only worse and it never went away).  As those are caused by waste products in the tissues, your explanation makes a lot of sense.  Some one must know the mechanism the body uses to rid itelf of the toxins from exercise, so wouldn't that be useful in finding strategies to help the body rid itself of the PMR toxin buildup?

This is how I understand it...It is actually simple. Blood flow removes toxins buildup after exercise and bring nutrients to muscle cells. It is blood flow restriction due to inflammation of the small blood vessels (capillaries) that causes those toxins to be accumulated in the muscle tissue. So anything that increases the blood flow helps. Gentle massage helps, hot bath helps, and certain kind of exercise helps. This is why I exercise as much as I do... The level of the effort has to be in the low intensity ( zone 1 and zone 2), which they call in training manuals "recovery exercise" for a reason. It has to be done below 70% of the max HR. It promotes increased blood flow without causing additional inflammation. In addition, if done for long periods (over an hour at the time) it will increase vascularization in the muscles ( new capillaries are created).

 

The waste products are removed by blood flow - and oxygen and nutrients are supplied by the blood. It is likely that the inflammation/swelling due to the autoimmune disorder reduces blood flow, so reduces oxygen and nutrient supply and reduces the efficiency of removal of lactate and stuff.

Simply a plumbing problem - the pred clears out the obstruction...

 

Nick, I was moderately active throughout the period I was developing PMR.  It's a bit late now, but what could/should I have done differently?  Currently I do not do high intensity exercise, but walk, sometimes briskly, and have a whole suite of physio and yoga exercises, as well as tai chi.  I seldom seem able to check my heart rate efficiently, and wouldn't know what it meant anyway....  (When I do check it never seems particularly fast.) 🚶💃🏃🚶

It really doesn't matter any more what you could have done differently...What matters is what you plan to do now.  If I gave you an impression that high intensity exercise is what I am doing, it is wrong. Most of the time I am doing easy pace ( about 80-90% of the time). I only do higher intensity for a VERY short time.  As far as measuring HR, I use chest band and heart rate sensor that sends signal to my watch ( or phone) where I record it. During exercise I check HR all the time and adjust my effort to be in the "zone". Later at home I can download data and graph it on the PC.  If you have smart phone, it is easy to find HR sensors. Several companies do that now... I have one made by polar, which has been making those sensors since early 90's. They are good, but a bit on expensive side (~70-80 USD)... You need one that communicates with app on the phone via bluetooth.

Lastly, if you get serious about exercise, you may want to get physical to make sure that your heart can take it. I get stress test every 5-7 years myself. 

Hope that helps.

Nick, no smart phone.  (I'm too cheap, haha.)  Have to remember to stop when I've been walking for a while to check my pulse and count it.  Actually did this the other day and pulse was about 100 per bpm.  This seems rather pathetic to me, shouldn't it be significantly higher after walking briskly for, at that point, over half an hour?  Seem to remember many years ago in aerobics classes that I always had trouble getting my heart rate up into the optimum zone, so this is nothing new.

Smart phone is a computer and I use it for many purposes, like schedule and appointments, gps and navigation, to track my exercise ( route and calories).  As far as HR, your count is not accurate. As soon as you stop, your heart rate slows down.  Besides, it is nice to have feedback while you exercise if you are slacking or going too hard. 

About pulse being ~100 or so.. Zone 1 and 2 for most of us ( 60+ of age) is the lower limit. You should be OK if you keep it below 120.

The alternative to smart phone ( as far as HR) is dedicated watch + chest band. Either way, to get something going, one needs to commit ... Take a Nikes' slogan - Just DO it!

Nick, I trust your admonition to "just do it" is addressed to thread followers who have not yet committed?  I'll try not to weep, thinking that perhaps I'm not yet doing enough.  But then, you don't know me and all that I do, although i think my list of activities is somewhere in this thread.  I know you are trying to be helpful, and informative, but now I feel somewhat discouraged.  

 

I think you are reading too much into it. Perhaps you are doing enough, but HR monitor would help you to be more efficient, that is all. As far as commitment, PMR makes our bodies weak, and it requires commitment to fight it back and reclaim one muscle at the time. Recovery  does not happen by accident, or luck... it is  hard work.

"Recovery  does not happen by accident, or luck... it is  hard work."

Sorry - I have to disagree. That suggests that anything we do has an effect on the underlying autoimmune disorder that causes the symptoms. You are implying that it is our own fault that we don't recover sooner, better, whatever. At present it isn't known what is the cause of the disorder - if you don't know the cause you can't say this or that or the other will "make it burn out quicker". People may perceive they "get better" by increasing exercise - but it may also be that the activity of the disease has lessened to allow them to increase exercise. That is not the same thing at all. There is no doubt that moderate exercise improves mitochondrial function but it also depends on the level of dysfunction. 

It is becoming accepted that PMR is a very heterogeous disease - and that probably means that there are several causes and equally several ways of managing it better. The only commonality here is that a relief of symptoms is achieved using pred. But because YOU feel better by doing more intensive exercise doesn't mean that I will. PMR doesn't "make you weak", physiological measurements can't identify any weakness of the muscles. They are intolerant of exercise when the disease is active - but that is something else. 

Lets think for the moment...

 " At present it isn't known what is the cause of the disorder - if you don't know the cause you can't say this or that or the other will "make it burn out quicker". "  If the statement is true, and we don't' know what causes PMR, how would we know that exercise does not help recovery? 

"People may perceive they "get better" by increasing exercise - but it may also be that the activity of the disease has lessened to allow them to increase exercise."  Sorry, but that is not my experience. I know that because I structured my workouts in such a way to promote recovery  and also load muscles during interval training to increase their capacity and tolerance to exercise. When I started biking, it took me 45 minutes to get to the top of the mountain. Now I get there in 30-31min. First time I did intervals, it took me 2 weeks to recover from it... Over time, by carefully monitor my body response and carefully increasing the intensity I have come to the point, after 6 months that I can do 100% intensity while biking. I have performed HR Max test  last week( something similar to stress test. )

I agree that "PMR is a very heterogeous disease" and what works for me, may not work for you or everyone. Nobody knows whom the exercise may help until they try.  There is not guarantee in life.

What I was saying was that exercise does not necessarily "make the PMR burn out" - I was able to do far more exercise towards the end of the ski season than at the beginning by building it up very slowly, just as you are doing. I can no longer do that - but the PMR had never gone away even then. I have always said that it is possible to increase the amount you can do by "training" very slowly and there is no doubt that exercise does help in PMR. It doesn't, however, CURE it.

Sometimes people read posts like yours and feel they have failed in some way because they can't do what you do - you are male, men experience PMR and pred differently than most women do. It isn't known why, it just is. 

I agree with you, Nick, insofar as there are actions we can take to encourage our recovery - notably diet and appropriate exercise, and perhaps also a few alternative treatments can help some people recover a bit more effectively or lower the dose of steroid needed to manage the pain.   But I disagree that we can actually create or speed up our own recovery in, say, the same way as one might "recover" from being overweight or physically out of shape.  It's also fairly well accepted that males and females experience PMR rather differently and our paths to recovery may well be quite different too.  Plus there's no denying that prednisone itself is a real problem when trynig to maintain physical fitness.  This morning I "Nordic walked" for approximately one hour total in four spells to get to and from my physiotherapist's office, where I had one of my regular light therapy sessions.  No energy left now to do much of anything.  I've been taking pred for about eleven months now.  During that time I've maintained, indeed increased, my level of physical activity.  I've modified my diet, and developed strategies to avoid stress.  The most I can say, now that pred dose is 4 mg and holding, is that pred-induced weakness seems to have stalled.  I'm no stronger now than I was last fall, and by then, three months into treatment, I was weaker than I'd been pre-pred after over a year of severe PMR symptoms. 

 

I think now we agree, that, just like pred, exercise does help in some ways to manage PMR. I wanted to do things that I was able to do before PMR, and for most part, now I can . 

But I want to make a point here and to do that , I will switch the subject, to avoid emotional reaction when I talk about PMR...

I will use my work to better explain what I was trying to say. I trade stock market for living. Although I am retired, I still do it (This is why I am up sp late at night, to trade US markets).  Now everyone knows that most of the traders fail ( some say 90-95% lose money). Because it is the game of luck, they assume they just had bad luck. No doubt, it is a game of probability. Every time I put a trade, I don't know which way the market will go and to make it worse, I can't control the market. If I accept that it is luck only, then I have given up the control of what happens. While I cannot control the market, what is in my control is how I manage the trade. There is a profound difference.  I took a control and I accept the responsibility of the outcome. Instead of passively watching events, I am actively managing the outcome. It is not up to luck ( or market) any more.

So in my posts I was trying to encourage people to take control and actively participate in recovery... that's' all.