I received a private message from @alanbruce that I think a lot of you may be interested in or thinking about. Alan said it was OK so I thought it might be a good idea to start a new discussion.
Alan’s question — I started out on Prednisone last August on 20s and I am now 4s. Just had blood work done and from a month ago SED rate is now 4 and it was 3 and CRP is now .5 and it was .3. Both in normal range. Do you normally see these reading go up when Prednisone rate goes down. How will I know if I can continue to decrease prednisone? will there be significant discomfort and or Higher test number possibly above the normal range as taper down. Can different labs give different results.
My response — Hi Alan, You ask a really good question. I’m have no medical training or background but can share my experience with you. Would you mind if I answer your question in the discussion? I think it’s a good question and others may be struggling with the same question.
I think the SED rate is just an indicator of inflammation which is what the prednisone treats. The kicker is that each of us and our tolerances are different. When my PMR came out of remission back in June/July of 2016 and I went to the doctor, he ordered a SED rate test and mine came back at 16 (normal for men being 0 to 22) and confirmed the PMR was back. I started back on 20 mg prednisone and tapered off at a rate of up to 5 mg a week once I was feeling better and most of the pain was gone. When I got to 10 mg I changed to tapering by 2.5 mg a week until I felt OK at 5 mg. From 5 mg to off I switched to 1 mg tablets and went down 1 or 2 mg a week. I can tell you there was a lot of setbacks and going back to the previous dose for a few days and then going back down. I was able to stop taking prednisone on the last day of February 2018. I still have some stiffness in my hands and shoulders mostly in the mornings which I try to control with some stretching exercise and 30 minutes or so on my recumbent exercise bike. I had a SED rate test Jan 1, 2018 and it was at 1. That was about 2 months before I stopped taking prednisone.
Alan — I am glad to have you share my question and your answer. A couple more questions .
1. at point did you know it was time to go back on or a higher amount of Prednisone?
2. How was the doctor to know that the PMR was back as I assume there is no test for PMR, I was also told that I had PMR and the Prednisone eliminated all of the pain but I always wondered how the doc knew PMR was my issue .
3. since it takes so long to see the Doc at what point in time did you think it was back?
4. Is the 20 mg and the tapering process you went thru a standard process. I have been on the Mayo’s tapering protocol and now on 4 mg and started having some morning stiffness in both shoulders. Stretching, hot shower or a spa when available totally frees it up. Do you take any over the counter pain med such as Tylenol. I have a torn rotator cuff in one arm and thought to stiffness in that arm was the explanation. I am suppose to go to 3s in two weeks and I know wonder if I should stay on 4 longer or what. It seems as though there is no standard answer. I see the Doc at the end of May and I will see what they say.
Thank you Alan for questions that I know most of us with PMR have asked or thought about. I will give you my experience to the last 4 questions in the first post below. I’m hoping other members will share their experience in relation to your last 4 questions and offer suggestions for what worked for them.