Prednisone tapering is challenging. What does remission feel like?

I haven't used dexamethasine but it's supposed to help with inflammation and swelling - https://medlineplus.gov/druginfo/meds/a682792.html.

My only question would be for the doctor if I'm taking the drug and it's not helping or reducing the swelling - what else helps?

Well my problem is I am new to the docs...I moved here a year ago. It's been hard to see my rheumy. She diagnosed me ran blood work told me to.stsrt on 20 mg pred a day. That was kind of it. 3 to 4bweeks later things improved I saw her snd she said ok go to 15 for 2 weeks then 10 mg. Well everything is screwed up and I can't get things to settle. They ran labs a 3rd time and my labs were just under where I started. Do they told me to go to 12 mg. So here I am...I moved myself to 16 mg. for weeks. Finally I upped it to 17.5 3 days ago...it did help my back and hip pain (as of today) but my hands and ankles are swollen. My hands are bugging me but not bad. I am also exhausted and feel ill. Yesterday was my regular appt with my PC and he raised the dexa instead of pred. I am now tired and confused....do I start the dex...fo I stay the course....do I start over and go ton20 and stay until things are right then reduce slower than the rheumy wants....I won't see her.until next month. So...I really miss my old rheumy...in DC. Delaware is a different animal. But I like my new docs just not enough contact. They are all slammed becausebI think the need is greater than the number of docs. But I have learned a lot want to get you off the pred fast....that does not work
But learning about how to manage this came from this site and one other one I found. I worry about dex because net's adding another thing to the mix.... I don't have to take it...he was trying to help and thought it might.work better. I am pretty sure my ankles and hands are PMR related....unless PMR has kicked up my RA ...I have only had one flare of RA back in 2015. So....sorry blah.blah....

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

I've had 2 occurrences of PMR six years apart and it is OK to be optimistic. After my first round with PMR, I did make some lifestyle changes and started eating better and exercising more which I'm sure helped. The COVID vaccine didn't cause my PMR and I've had both Pfizer vaccines and the 2 following boosters. Not sure if I will get anymore though.

Thanks so much for your feedback. I have been kicking around going to 20 again. I do need to track things was planning on that but no energy. Need to just do it. I need things to improve a smidgen. Ok I will check out the links tomorrow. Be well.

When my hands get swollen I use my paraffin moist heat "hot wax" 3 or 4 times a day and it seems to help. .y left wrist gets unbearable with carpal tunnel and it helps with that as well. It's no miracle cure but helps to cope with.

@njtodctode - Another consideration that you might want to discuss with your doctor/rheumatologist before switching to dexamethasone (long-acting) is the dose equivalence to prednisone. The dexamethasone tablets are much smaller from what I've read and much stronger so tapering might be more difficult when you can't split the small pills.

The 1.5 dexamethasone tablets are equivalent in strength to 10 mg prednisone tablets.
-- Corticosteroid Dose Equivalents:
https://emedicine.medscape.com/article/2172042-overview

I heard that yesterday. He's starting me out on a fairly high dose then. I think.he wrote it for 4....so 40? Hmmm. I don't have to take it....or maybe I could take it for awhile to see if it moves me to a better place then use.pred. I know they make doses as low as .5 but that's still high I guess if it works the same as pted time wise. Lordy......my brain cells continue to hurt.

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.