I also subscribe to a pmr forum on Facebook. The following was on the site yesterday. The poster has recently been diagnosed and wants to taper to as low as possible before her adrenals shut down in three weeks. Have any of you heard of this approach?
"I’m newly diagnosed and was helped tremendously in less than 24 hours (thank god!) by 20 mg. Prednisone. I stayed on that dose for 7 days and the Internist was going to reduce to 10 but I asked her for 15 and stayed there for 3 days, then 12.5 for 1 day, now 10 today. I’ve been virtually pain-free. I’ve learned that the adrenals won’t shut down until 3 weeks on prednisone so I am racing time to get to the lowest dose I can before that happens. I’ve been on the AIP diet already and now added magnesium malate, bromelain, and omega 3 so maybe that is helping. Dare I try 7.5 tomorrow? Anyone else titrate down this much before the 3 week window closed?"
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It won't work if they really have PMR - and the adrenal glands have nothing to do with symptom relief in PMR. The only thing that works at any stage is enough pred and that varies. They obviously don't understand the disease process - inasfar as it can be understood at present.
I originally was given a 6 week taper of pred to carry me over a trip to the USA. I'd had PMR for 5 years by then but never diagnosed. The starting dose was 15mg and 6 hours after taking the first dose I experienced a miracle, the pain was almost gone and I was able to walk downstairs instead of stomping like a toddler one step at a time. And walk back up normally, carrying a cup of tea, instead of putting the mug as high up as I could reach and crawling up on hands and knees, rinse and repeat. I was great on 15mg for two weeks, I dropped to 10mg for another 2 weeks, then 5mg for 2 weeks. Those are normal sort of reductions for short term use of pred. I was fine even on the last day of 5mg. The next day I had no pred to take - and in under 6 hours I was as bad as I had been pre-pred, in bed, in tears of pain. 5mg wasn't enough to get it under control and it was over 4 years before I got much under 10mg for more than a few days. I often wonder if I had stayed at 5mg and not stopped if my hourney would have been different.
PMR is a chronic illness, not something for which you take a course of pred and stop as you do for many illnesses. As long as the underlying autoimmune disorder that is causing your immune system to attack body tissues in error, as if they were foreign and not self, is active there will be inflammation which which cause swelling and pain and other symptoms. The only realistic available option to manage that is pred which cures nothing but manages the inflammation to allow you a better quality of life in the meantime.
They are also wrong about the 3 week window - that is for high doses of pred as used in GCA, it takes longer at lower doses - as shown by my reduction, I was fine but the cause of the PMR was still there. Since then I have got to 5mg but I have a resistant form of PMR, it hasn't gone away for long enough (if at all) for me to get to a lower dose. It certainly never went away in the first 5 years!
Also in the first several months adrenal function will return OK if you reduce slowly. Initially there is no shut down - just the natural reduction of production of cortisol because there is plenty of corticosteroid present to allow the body to function. All other adrenal hormones continue to be produced but the feedback system tells the organs involved that there is plenty of cortisol so the stimulating substances aren't produced. In some ways it can be likened to the central heating thermostat telling the boiler that no more heating is required because the woodburning stove in the living room is keeping that room warm enough for the thermostat to switch the system off. As the wood fire burns down the room cools too - and the central heating comes on again.
Hmm well, if they do have PMR I’d give it a while before calling this a success because the initial higher doses may have damped things down while the disease process continues. The build up of inflammation may be asymptomatic but by the time it reaches tipping point the Pred is way too low. I’m not sure why the thought of (usually reversible) adrenal shutdown is far worse than build up of PMR inflammation and possible graduation to GCA as well. The trouble is with going down so fast is that the lowest dose could easily be over shot. So, if a flare occurs, do they go back up to 20mg? 15mg? 10mg? They could end up on a higher dose than needed by quite bit because the steps were too large to give any dose accuracy.
It might be quite sensible if they are checking for PMR, so they could stop if it is found not to work and want to get off pred before the adrenal glands go to sleep. They normally only check for a week or so. It does seem that pred is helping though, so the person involved may need to continue.
I have been in pred for 2 years the lowest I can get to on a daily maintenance is 6-8 mg
Most days 6 a few days a week 7 or 8
I have tried several time to get 5 or below my life
Quality is poor below 6 burning hands aching feet shoulders and hip pain.
When newly diagnosed we tend to assume that we can get away with not following DR advice on amounts needed but PMR is a long term condition and you will figure out how low your willing to go for your quality of life balance.
I also take 25mg of Meth 1 time a week. Good luck.
You were on prednisone for how long? You can come off quickly if it's a short term blast for certain conditions, not, unfortunately, after the long term treatment, several years, PMR requires.
That's very interesting then that your adrenal production of cortisol doesn't seem to have been affected. I assume the pred was acting as an effective inflammatory? I hope you are keeping well these days?
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