Prednisone tapering is challenging. What does remission feel like?

So sorry to hear you relapsed. Did your doctor happen to take a blood test of your inflamation markers anytime around your relapse? Just curious if there was any change either way. We hope for the best for you. Myself, I'm doing great at 8mg for my arms but the legs are a mess, so I'm ignoring them for my PMR. My sed rate and CRP are ok. My Rheumy likes to taper too fast and it will be interesting if he tells me to jump to 4mg (1 pill) all at once and I refuse. I'm torn between ignoring him and following my own pace or challenging him. Guess I'll see at the time. Best of luck.

That is great that you have gotton down so low and are feeling better. I don't know what your doctor has planned for you but I do like to follow the adage "make haste slowly". You certainly don't want to undo all the good work you have done.

Hi. So I’m down to 1/2 mg of prednisone. I’m having pain again. I see my rheumatologist on Wednesday of next week. If my blood tests are normal I’m going to ride this out for awhile. If everytime I taper I go through this I could be on prednisone for more years. I’m just curious of this will eventually away on its own. I’m taking Celebrex on some nights which is gentler on stomach then some of the other anti inflammatory meds. Not sure what will happen but after 3 years on prednisone I would like to be done but time will tell.

@flymetothemoon, My first time with PMR last 3 and half years with the last six months going back and forth between 1 mg and 1/2 mg until I was finally able to stop taking prednisone with little to no aches and pains when I woke up in the morning.

You are getting there and hopefully will be in remission soon!

Thanks John for your positive words. I need them. Tough journey.

Hi Loyal, I was wondering if you had back and neck pain before PMR?. When I was.in the throws of it before diagnosis my hands were.beyond painful and
useless....it was so bad I was not fully aware of the other pain much as my hands. I realized I had pain in my.hips, back, thighs.....and my neck was."tired" so I would need to use a pillow. I have fibromyalgia, severe OA, RA, sjogrens....since the 90's so pain is always there...as well as fatigue and some fogginess. So the one issue I didn't have was back.pain. Now I do. I am asking because I am learning about pred managent...I have been on quite the ride. I am on 16 mg and have been for weeks. I spend my day trying to figure out what hurts or doesn't....and which type of fatigue.I am experiencing. The back pain pops up every day...and other things
I.had one day where I thought.things might be calming down but then the next day my back was spasms. It's hard to know if it's PMR or.....but I didn't have it before so I think it must be m PMR.....see where I am with this? I don't know what feel better.really is. Then I think m should I go back up on the pred.... what's a girl to do.

Dear Njtodctode, I don't know if that question is rhetorical or not, but here is a suggestion: Get moving. If you can find a PT place that is quiet (not the noisy gym type) where they deal with all levels of mobility. Surely, your rheumy will give you a referral. Be vocal about your needs and start low and slow. Or failing that, find a pool where you can go and just move around in the water. This is good because it supports joints. Anything you can do will help. If you are already doing all this, then that's great. What I heard a doctor say once comes to mind: "Life is hard by the yard, but a cinch by the inch." We're living proof or that. (I think you have even more auto-immune diseases than I do! We're tough or we wouldn't be here.)

I would if I didn't feel so sick all the time. I am a mess and wondering what is going on....too much pred?...not enough?..do I have PMR....my back spasms are so bad I have to sit after about 10 mins of standing. What?????????That's why I am trying to find out what kind of back pain you all have. I am so upset because as you see I have lived with.pain and with all of those conditions since early 90's... worked in an insane fundraising jobs for non-profitd with crazy.hours including directing 2 - 3 day breast cancer walks.....but because my doc and I figured out meds I was able to work. Years later I hit a wall and had to stop. While I am afraid of going places filled with lots of people because of covid (I still need to get the 4th booster but can't cuz of the pred) I appreciate your advice 100%. I feel a bit list. I also just moved to Delaware in the past year and still have stuff to do around here. I live my house so much.which is good...I downsized from a bungalow....this is one level, small and new. I have to be honest....I am not sure I do have PMR....But I think I am just overwhelmed and tired of asking the same questions. I don't 't know how to evaluate these symptoms. My foc is not available to see me until end of Sept. She was of the mind of hurry up and get off the pred. So I am kind of doing my.own thing. Do I wait until my back and hips are better? Should I reduce and see if I feel less sick? Blah blah blah. SORRY.....I am not having a good day. I feel like the pred is not right....that's a gut feeling. But I know I have to be super careful
Anyway.thanks for your help and support.

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@njtodctode, PMR can be difficult to diagnose and prednisone normally takes away the pain when you start taking it. I know we like to get off as soon as we possibly can but if it were me and I wasn't sure if it was PMR or something else like fibromyalgia, I might just bump up my dose for a few days to seek if it makes a difference. If not, switch back to what I was taking before. You mentioned in a previous post about having fibromyalgia and a few other conditions. Not sure if this is helpful, but it might provide some symptom information.

"Similarities and differences in symptoms of polymyalgia and fibromyalgia include: The location of the pain. People with fibromyalgia often experience pain on both sides of the body, usually in 18 key places. People with polymyalgia typically feel stiffness and pain in their shoulders, back, and hip girdles."
-- Polymyalgia vs. fibromyalgia: Similarities and differences:
https://www.medicalnewstoday.com/articles/321532
Hoping you find some answers soon...

Thank you John. When I am reminded of the specific symptoms of PMR it does fit. I think the dancing around on pred dosing is the issue. I started at 20.and had fast relief of horrible pain...especially in my hands. They.feel sore sometimes now but the other symptoms are more present...girdle, R arm, tired neck not really painful....and exhaustion and feeling sick, very swollen ankles and top of my feet. I have gone from b 20 to 15 to 10....one month and then two weeks apart on those.doses. I followed what my doc said
Then I went to 20 again then down to 15....didn't feel it was working...16 now. My brain cells hurt from this....
So should I go to 20?. Then wait how long for things to settle or know it's maybe not enough....see what I mean? Anyway that is what I am trying to know. My labs did go down after my first month and 1/2 of treatment but then they returned to high levels. Anyway thank you so much for replying. I am grateful. Mickie