Last week I took some advice about flares
Increase by 5 mg for 5 to 7 days then return to 1 mg above where I left off.
I experienced great relief after 1 day at the increased dose and this is day 6 and I feel great. My exercise routine is enjoyable again.
Am returning to my original dose plus 1 today and will post again in a week or so to give another update.
Fingers crossed.
Good, but don't go mad with exercise just because you feel better.
What exercise routine? Remember the oxygen supply to your muscles is impaired........don't over do it please
You learn something every day,how did I not know this about oxygen to the muscles,that could be why I have sore leg xx
Thank you for reporting on this. People are always wondering how well this technique works in reality. I hope it all settles and you feel better permanently.
Yes, I was reluctant to do it but it seemed worth a try, at least it relieved the aching kin my shoulders and neck and legs.As I said I will let you all know how it goes in the next few weeks.
will be interested in seeing how you are doing. I had to increase to 10 after covid 2nd shot. but have dropped back to 5 successfully and saw doc and had sed rate done and it is 15 (although I am in US and probably different numbers from you..but 15 is fine. not perfect but fine!) (59 when I began this darn old journey! 3.5 years ago.) Hoping to start dropping again. had been at 2. Had dexa scan again. will post results. already osteoporosis. let us see what has happened in the prednisone years....
Canada here and my last ESR was 17 which I'm sure was heading even higher. Next blood work on April 8 will be interesting as I now feel great after the 6 day hike. Now day 2 of the lower dose and so far so good.
That must have been awful to get PMR so young. I was 70 when it started and glad I was retired. I had to give up my volunteer driving because I couldn't safely drive with my neck so stiff.
Will post again after a week to give an update on this trial.
Oh no my ses rate was 59! I was 70 now almost 75
Ah ok,
fyi mine was 76 when diagnosed, I could hardly walk at that point, couldn't sleep either.
Thank you for sharing. That is very helpful. How long take you droped prednisone to 1 mg? I had trouble to drop to 7 mg.
I had a strange experience with my tapering. Went from 8.5 to 8 about 8 days ago and about day 6 got the worst pain along the edge of my left rib. I had an appt with pain doc the second day of this pain and he said it could be related to my PMR, involved a nerve from my T10 vertebrae. So last night I took 9 mg. and this morning the pain is almost undetectable. The right rib has some discomfort but only when I press on it, unlike the left side.
Anyone else have any issues like this? I will do 9 mg for a few more days then back to tapering. I lucked out with this doc as he was involved in PMR treatment and study as an intern. I gave him a copy of the editorial posted by PMRpro. Awesome article.
Can I ask what your exercise routine is?
Just basic yoga to keep spine limber and stretch the legs shoulders - once a day and only about a 20 minute routine
Hi Alebeau, I notice your post is a couple of months old now - how did you get on? I am currently experiencing a flare up and am thinking of uping my Pred dose for as short a time as I can. Did that work for you? Did you manage to get back to your lower dose ok? Thanks
Yes it did work and am now back to slow tapering. I increased by 5 mg for 6 days then back to 1 mg above where I left off. I was reluctant to try it but figured it's the only way I will ever know. I do monthly blood work so I also have the advantage of seeing the ESR and CRP levels - at that time my ESR had spiked but is now more stable.
Maybe I spoke too fast, blood work yesterday shows ESR 20 and CRP 16.8 and I must admit those familiar aches have been slowly returning over the last couple of weeks. I am not sure what to do next but I definitely have difficulty crossing the 10 mg marker.
I will try a different method this time. Maybe go to 12 and start tapering again from there as 12 mg seemed to be the sweet spot for me.
Sorry if I mislead you or anyone else experiencing flares.
I welcome any other advice at
this point.
Nothing will get you past the dose you are looking for: the lowest effective dose that gives the same result as the starting dose. You might get further with one of the slowed tapers if your problem has been steroid withdrawal effects - but that won't raise the markers, it isn't inflammation. It took me four years to get lower than 9mg/day, didn't matter how I tried. It doesn't mean you won't get lower, just not yet. And the more you try to force the dose lower, allowing in a flare, the harder it may become. I got down to 5mg some years ago. I have had some real relapses and each one has left me needing a slightly higher maintenance dose even after a couple of years.
Thanks for answering.
I have tried DSNS but it is so complicated I decided to reduce by .5 mg each time but only when I feel good and the blood work is in the normal range. I get the blood checked monthly. It's not the first time I have tried to get lower than 10 and am now 2 years and 7 months in to PMR.
I may hit the 4 year mark as you did to get below 9 so I won't rush it.
Thank-you
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