Best way to taper Pred to "help" PMR burn-out
Posted , 11 users are following.
I have been tapering prednisone from initial dose of 15mg to current level of 7.5mg over 6 months period. Each time I have used DSNS- short version method ( 3-1, 2-1, etc) and had no issue. As I am approaching physiological level ( 5-7.5), I wonder if there is any advantage to stay above that level and not engage adrenaline glands, or is it OK to continue with taper to reach minimal dose that would keep PMR symptoms at bay. Does it make a difference? I have read Bristol paper and realize that they had stayed at 10mg for one year (well above physiological level), I see 10mg as arbitrary number, not a result of any research ( I could be wrong). To me the value is the concept that one comes down with dose to lower level and then stays there for PMR to burn out...
I would like to hear your thoughts, comments and if there is any research on this subject.
0 likes, 28 replies
Oregonjohn-UK nick67069
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Daniel1143 nick67069
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Anhaga nick67069
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I'm also getting a bit puzzled by the concept that PMR "burns itself out". At first I accepted this unquestioningly, but what does that mean, really? That in our bodies is some sort of "fuel" which has to be consumed before we can get better? Can we rid ourselves of this fuel in other ways (diet, lifestyle changes, stress reduction, exercises)? So I answer your question with another!
nick67069 Anhaga
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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?
Anhaga nick67069
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lodgerUK_NE nick67069
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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'.
Anhaga lodgerUK_NE
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nick67069 Anhaga
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EileenH Anhaga
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Simply a plumbing problem - the pred clears out the obstruction...
Anhaga nick67069
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nick67069 Anhaga
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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.
Anhaga nick67069
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nick67069 Anhaga
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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!
Anhaga nick67069
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nick67069 Anhaga
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EileenH nick67069
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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.
nick67069 EileenH
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" 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.
EileenH nick67069
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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.
Anhaga nick67069
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nick67069 EileenH
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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.