Prednisone tapering is challenging. What does remission feel like?

Hi John...so I picked up the dex. 4 mg pills it says to take 2 a day...but he did tell me to start lower cutting the pill. He was being flexible just wanting to help me. It does say it can be used for swelling and.I think that's why he thought of it...to help my blocks for ankles and Mickey Mouse hands. Anyway I have a q for you. So I went from 16 to 17.5. I have been on the 17.5 for a week. It's not doing a lot. I get about 3 hours per day after noon where my back does not.spasm and my other PMR spots settle down. The fatigue is still there. My back was really bad this am. Anyway...my hands are twingeing a bit which.kind of scares me. My hands were in unbelievable pain when this started. Couldn't use them and could not control the pain. SO my q is should I go to 20 now n which was my starting dose or maybe try an equivalent of the dex and see what happens. I would think a week will give you an idea if the dose will help...right? Or am I misunderstanding that. If you have feedback pls. share even if you.just.want to tell me I am crazy. I accept that. Ok take good care.

I don't think you are crazy. The same questions would be going through my head if it were me. I don't have any experience with dexamethasone so would see if 20 mg prednisone would take away all my pain especially if it helped before? If not I might talk with the doc and try more dex.

Has anyone had PMR disappear gradually? I'm thinking that if my PMR was triggered by my second Covid booster, it may slowly go away as the booster effectiveness wanes. I am off Prednisone now and feeling pretty good, so I am cautiously optimistic, but would love to hear if anyone else has had PMR fade away...

@njtodctode, I think if it were me, I would go to the last dosage that I felt good and try to taper much slower. Keep a daily pain log for how you feel when you first get up and what dosage you are taking for the day. The only time I dropped by 5 mg was when I went from 20 to 15 mg. After that I either went down by 2.5, 2, 1 or 1/2 mg. My rheumy made it easy by giving me an RX for 5, 2.5 and 1 mg tablets. If my pain level was greater than 2 I didn't taper down and a few times increased my dosage by 1/2 of what I previously tapered down. There is another discussion I think you might find helpful:
-- PMR Dosages and Managing Symptoms:
https://connect.mayoclinic.org/discussion/pmr-dosages/
Talking with new doctors can sometimes be difficult. I think you might find some good suggestions on planning your conversation with your doctor or rheumatologist here:
-- https://patientrevolution.org/visit-tools

Good advise as always John. I’ve been on this site for 2.5 years. I have had to increase my pred after tapering a few times. It’s been a roller coaster as many of you know. I’m now at 5 mg, I only go down 1/2 a mg a month right now. Having significant lower back pain and associated nerve pain down both legs, managed by? Heat/ volteran topical. Stretching exercise is only partially helpful. Still walking in late afternoon but it’s slow and no more than 2 mi. I’m feeling defeated and frankly down. I have underlying spine issues( stenosis lumbar and cervical) and an think it that some of this pain is now being unmasked by the lowering of the Pred. Since my leg and foot go numb intermittently when I walk/ stand. Have an ortho/ spine referral. In progress at UCSF. Ideas suggestions?

Good advise as always John. I’ve been on this site for 2.5 years. I have had to increase my pred after tapering a few times. It’s been a roller coaster as many of you know. I’m now at 5 mg, I only go down 1/2 a mg a month right now. Having significant lower back pain and associated nerve pain down both legs, managed by? Heat/ volteran topical. Stretching exercise is only partially helpful. Still walking in late afternoon but it’s slow and no more than 2 mi. I’m feeling defeated and frankly down. I have underlying spine issues( stenosis lumbar and cervical) and an think it that some of this pain is now being unmasked by the lowering of the Pred. Since my leg and foot go numb intermittently when I walk/ stand. Have an ortho/ spine referral. In progress at UCSF. Ideas suggestions?

I think it's good that you can walk 2 miles no matter how slow it is. I probably can't walk more that 2 or 3 blocks without resting some. It's mostly because it's hard for me to walk normal with good posture. I lean forward quite a bit which I think is similar to camptocormia or bent spine syndrome. I don't have any real pain but do have some ache and pressure in the lower back. I'm the guy that loves to push the shopping cart at the grocery store because it helps me walk 🙂 I did purchase some inexpensive Nordic trek poles that help me walk more erect if I want to walk around the neighborhood. I've heard some members have had good luck with Myofascial Release Therapy (MFR) and there is a discussion on the topic you might want to take a look at -- https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Have you heard of Myofascial Release Therapy?

Thanks Sandi. I do have walking poles and use then sometimes. We’re all in some sort of discomfort it seems. Sorry that your back pain is not resolved. When did you get diagnosed with PMR? Similar situation as mi e in that. K pain from orthopedic issues plus the back/ hip pain from PMR. It’s been : years total, though only treated for 2.5 hrs. It took awhile to figure out what I had. AgIn, not unusual journey for fellow PMR’ers. I hope your PMR is under control. Thanks again for your suggestions.