Prednisone tapering is challenging. What does remission feel like?

Thanks for the welcome. I am learning a lot from this blog, and really enjoy reading it. As far as I know, I do not have PMR. As you know, fibromyalgia is a gift that keeps on giving. I have been diagnosed with two new diseases in the last 12 months.

Hello John and thank you for your welcome! No I have not been diagnosed with Fibromyalgia, but I am being treated for PMR; the onset of which was late March 2023. I do take Prednisone and am in the process of tapering; currently I take 5 mg a day. If all goes well I’ll step down to 4 mg in 2 weeks.

If you aren't splitting the dose for 12 hours apart, may want to try that. Or see if your doctor is ok with going up to 8.5mg.

In answer to your question, "What does Remission feel like?" I am now in remission as of 2 weeks ago. I found that tapering too fast did not work. I went down by 1/2 mg a month, and that worked for me. The thing I have noticed the most after finally getting off prednisone, was my sleep is starting to get back to normal. I don't get up at 2 AM anymore, and I manage to get 6 or 7 hours a night of sleep. I also noticed that I tire more easily than before I had PMR. I am having trouble getting my body back into the condition it was in before I got PMR, My strength has decreased dramatically and my endurance is terrible. But then again, I am 2 and 1/2 years older now, almost 75. So some may be from age and the rest from not using those muscles while in pain for such a long time. I am glad to be off prednisone, and I am trying to rebuild my body, and get my stamina back.

Thank you for sharing the details you have experienced in your remission. I’m on 2 mg now because pain at just 1 mg increased. I already feel more fatigued than when I was on a larger dose and a lack of endurance. I am 71 and have been on prednisone for 2 1/2 yrs.

I know how you feel. I tried to taper too fast once, 1mg every 2 weeks, and that same thing happened to me. I went back up to 7 mg. When I talked to my Rheumatologist, he suggested to taper by 1/2 a month, and the difference was amazing. It was slow going, but worth it. I wish you luck.

In February of 2022 I was diagnosed with PMR. My doctor placed me on prednisone 15mg to start. Every month I went for a blood test and with every normal reading reduced prednisone 1 mg a month. When on extended vacation with no lab work prednisone was not reduced until I had a test. Long and tedious exercise to say the least but for me very effective. Yesterday I took my last 1 mg prednisone. I have felt that I have been in remission for 5/6 months. However I continued with the monthly lab tests and prednisone reduction. You cannot stop prednisone all at once, as you need to let your body to start producing its own “steroids “. Based on my experience reducing prednisone is not a single event but an exercise in patience. The Mayo Connect site has been invaluable. I pray that my remission lasts forever. Be well.
Frank

I too developed PMR 7 to 10 days after 2nd Moderna booster shot, July 2022 at age 57. I am down to 5mg prednisone now 9/23. It took almost a month for the proper diagnoses. First sent to orthopedics. I read a similar store where someone else was also sent to orthopedics. I never even heard of PMR and everyone I talk too says to me, "PMR-what is that? I did get to 3 mg back in July but symptoms reappeared so now I back to 5mg and trying not to go up anymore. I never had issues with hips. calves, arms, neck, shoulder, hands. Started at 30mg. Hopeful. I really wished I never got the second booster. No one is admitting that the covid vaccines are causing issues! I have heard similar stories from others maybe not with PMR but other things. These forums are a godsend. Thanks to everyone. This has been hell dealing with. Ther is another mayo clinic link, "Can PMR be induced by vaccine."

FYI to be clear: I never had issues with hips. My issues have been with calves, arms, neck, shoulder, and hands so far.