Started at 40mg Prednisone about a year ago for PMR. Had classic pains and elevated crp and esr. Got down, over a year of tapering to 2.0 mg pred. Experienced my first flair (pain) last week and went to doctor. Crp and esr are normal, but I am experiencing all the physical symptoms of PMR. Does this sound right?
Richard07199
Richard, your rate of tapering, might be too fast. I was at. 30 mg a year ago, currently on 7 tapering to 6.5. CRP & ESR do not always paint a clear picture, they react to inflammation in the body, some time my are high, but not always. If the pain is reduced with Pred and was the same pain you had before, it probably PMR again. Listen to your body! Think positive and try to smile.☺️
It may well be - in some people still on pred the inflammatory markers do not rise again even with symptoms or may lag well behind the symptoms appearing. Symptoms should always trump blood markers, they are only a supporting piece of information and about 1 in 5 patients don't have raised markers before diagnosis.
As Mich says, tapering from 40mg (which is a high starting dose for PMR, it is a GCA dose) to 2mg in just over a year is very fast. PMR rarely burns out in under 2 years - less than 1 in 5 are that lucky. It is likely your PMR is stilla ctive and you have reduced a bit too far to control the inflammation being created every day. You will need under 5mg, all being well, but you do need to go back up a bit.
Thank you Michdonn and Eileen. I guess it’s not unusual that symptoms preceed inflammatory markers. Didn’t know that.
In my panic to reverse the new PMR symptoms, I increased my dose from 2mg to 4 then to 10 and finally 12mg before I felt sure of remission. I’m at twelve now for a while to be sure that I’ve stabilized, then I think I’ll start a reduction rate of 0.5 mg per month. (I was at a reduction rate of 0.5 every two weeks when I relapsed.)
I will see my doctor next week and play this all by her.
Thanks, again, for the quick reply and the support.
Richard, may I suggest looking at DSNS, you can modify the rate of reduction. I being very cautious and take the full 52 days, but on higher dose did the method in 26 days. Check it out. Thinking positive and smiling.☺️
Michdonn, Several months ago I printed out the DSNS procedure. I think our Eileen is the individual who posted on the net the one that I copied. However, for no good reason, I did not follow it.
Thinking otherwise now!
What exactly were the dosage increments ( decrements?) that you reduced by each 52 days?
Richard, EileenH, others and I have posted DSNS. When at 30 I did reduce by 2.5 mg after being on 30 for 6 weeks. Using 4-1 instead of 6-1, 4-1 is 26 days, 6-1 is 52 days. Now doing the 6-1 at . 5mg. I have tried to stay at 10% or lower on all my tapering since last June. A couple of minor flares, but almost no PMR pain. I worked 5 to 7 hours a day as a ski instructor at two different ski areas, with no problems now back riding my bicycle. We can lead a okay life on Pred. I am positive! ☺️
Do you need the link again?
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
You can do it with slightly larger steps too - you will only have one day at a time of feeling "different".
What is dsns please
Dead Slow and Nearly Stop - the first post on this link:
https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708
Leef, it is a method of tapering. The original 6-1 takes 52 days to go from an old dosage to a new. The method can be modified to fewer days, still keeping the same idea. When I was on high doses I used a modified DSNS, now I am using the full 52 days. Good luck stay positive and try to smile. ☺️
I have a procedural question rather than a medical one.
On the top right side of this forum page there is a green rectangle saying Follow This Discussion. One’s instinct is to click on that rectangle if you wish to follow this discussion.
When you click in that prompt, you get a red rectangle saying Unfollow This Discussion.
At that point are you following the discussion or not following the discussion?
Richard, I work on a cellphone, if I click on the green I am on. Red I am off. Good luck !
If you respond you automatically are following the discussion and the green bit goes red - you click the button to follow a discussion you are interested in but don't want to respond to just now. And to stop following it, you click on it to get the green box back.
Thank you Michdonn and Eileen. I still don’t understand. Maybe the pred is affecting my cognative skills (smile). Let me put the question another way... At the top of my page right now there is a red rectangle saying Unfollow This Discussion. Am I following the discussion or not.
Thanks for your patience with an obvious slow learner.
You are currently following it - if you click on the red rectangle it will turn green and you WON'T be following it any more because you have told it to be "unfollowed"...
Yaaay! Now I understand. Kind of counter-intuitive; isn’t it? I mean when you see red you’re good to go, when you see green you are stopped. No matter; now I get it.
Thank you.
Richard, I agree with EileenH. ☺️
Hello Michdonn. Thanks for the support. Now we get to the “small world” part... I also used to live in Narragansett RI! For 20 Years. Now I live in the Arizona desert. Really miss the ocean.
Hi Richard, I always love the ocean, and enjoyed the winter in New Hampshire skiing. We talked about having a little place in both locations. Then our daughter had failed back surgery, the doctors in Boston advised the Southwest. My wife had gone to school here in Los Alamos, so we relocated here. I love the mountains and really have been so busy I haven't missed the ocean. I do miss the great food that is available in the Northeast. But our daughter is doing much better and once again is able to live on her own, so life is good! ☺️