Prednisone tapering: How did you do it pain free?

Posted by betsyhase @betsyhase, Apr 5 12:40pm

I started Prednisone on 2/6/26 after being diagnosed with PMR. My starting dose was 12.5mg which gave me great relief but not totally. My PCP wants me to decrease by 1 mg per month. My concern is that I am noticing the joints in my hands are still swollen and stiff. This is an improvement from where I started but not my normal. My knees are in pain and weakness in my legs is constant. I am also retaining fluid by noticing my weight going up and feeling puffy. I am to get some bloodwork done on 4/9.
My question is did you get completely pain free with Prednisone?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

ess77 - Elizabeth | @ess77 | Apr 12 7:44am

In reply to @betsyhase "@retiredphil I am kind of stuck with my PCP since a Rheumatologist isn't available. So my..." + (show)

@betsyhase and all... Betsy, I love my PCP with whom I've worked over 25 years! He is superb... but, a Rheumatologist is dedicated to the autoimmune system and it's intricasies, as well as other issues, and good ones are on top of the best meds and doses for whatever. I'm thrilled with my Mayo rheumatologist who is overseeing most of my issues now, and sending me to Hemotology, Neurology, Endocronology, and specialties within those specialties and other departments as well.

That is to say, even in a large, teaching medical facility isn't possible, it is important to get yourself on the wait list or whatever to see a Rheumatologist. Perhaps your PCP will refer you for a consult asap and guide you to the right person in your area. It is not an insult to him or her, but a compliment that you trust his advice and guidance for what is best for you.

I hope you can make that transition soon and have specialized help... Blessings, Elizabeth

tweetypie13 | @tweetypie13 | Apr 12 8:18am

In reply to @kjoed53 "@ess77 Elizabeth, you are an inspiration! Today is my third day back up to 25mg and..." + (show)

@kjoed53 have you tried splitting your dose.?

pmrnew | @pmrnew | Apr 12 8:49am

amazing all these comments. Really shows me (all of us) that it is so different for many. I was diagnosed 1st week January 2026 after pain started mid Dec 2025. I refused prednisone for months. March 20th started prednisone high (I thought and it scared me) 30MG. ALL the pain was gone within 2 hours, completely blew me away. This doc said tapering 7 days 5MG. Now 3 weeks later at 15MG and pain free. I am skiing, hiking and doing upper body workout with a band. So will keep tapering. Little bit of quad soreness, but think that is from skiing pretty aggressively, since it is gone this morning. I don't have a PCP, nor a rheumy, saw this doc in a resort town. Maybe got really lucky.

kjoed53 | @kjoed53 | Apr 12 9:23am

In reply to @tweetypie13 "@kjoed53 have you tried splitting your dose.?" + (show)

@tweetypie13
I was splitting my dose in anticipation of being asked to lower my dose and also to try to alleviate some acid reflux issues...15+10 didn't work to alleviate the pain so I tried 20+5 and 15+5+5. I think the 25mg is the minimum I need to get the pain down to a functional level. I'm trying 20mg with breakfast and 5mg with lunch but that didn't work for me yesterday. I probably should be on 30mg but that could come with more or stronger side effects and more difficulty tapering down. I think I'm stuck where I am until I see the hematologist on the 22nd to see what else is going on with me.

Elizabeth R | @elizabethannr | Apr 12 10:16am

In reply to @ess77 "@elizabethannr and all... What in the world? You were on a 12-day cruise and 11 hour..." + (show)

@ess77 Well it was not perfect, of course. My ankles did swell about halfway through so I did spend some time with my feet up, afternoons. Also the pollen count in Paris got my sinuses congested and that turned into a sinus infection after we got home and it took about twice as long to go away. The only reason we were blessed to sustain the 11 hour flight was that it was a solo flight SFO-London. Much easier and less strain than puddle jumping. None the less it will be our last big trip in a good long while. Took longer than normal to recover from the jet lag as well, after we got back. All the same, we did manage, even at our interesting age, to check off number of spots on the ole bucket list. Including the "Springtime in Paris" that gave me the sinus infection, haha!

betsyhase | @betsyhase | Apr 12 11:13am

In reply to @ess77 "@betsyhase and all... Betsy, I love my PCP with whom I've worked over 25 years! He..." + (show)

@ess77
My PCP has referred me to both of our local Rheumatologist in my area. One turned me down and I am waiting on the other referral. They are booked out and maybe my case doesn't look impressive.
I do need to maybe push alittle harder at my PCP to realize my symptoms are isolating me and my bloodwork doesn't totally represent how I feel. I guess I am still in the learning process of this condition.
I am thankful to all of you in this group!

tweetypie13 | @tweetypie13 | Apr 12 11:50am

In reply to @betsyhase "@ess77 My PCP has referred me to both of our local Rheumatologist in my area. One..." + (show)

@betsyhase ask PCP to call referral Dr. might help

tweetypie13 | @tweetypie13 | Apr 12 11:51am

In reply to @kjoed53 "@tweetypie13 I was splitting my dose in anticipation of being asked to lower my dose and..." + (show)

@kjoed53
You are your one best judge. Talk to PCP and see if she will help you decide abt upping PRED now. Mine did.

ess77 - Elizabeth | @ess77 | Apr 12 12:18pm

In reply to @betsyhase "@ess77 My PCP has referred me to both of our local Rheumatologist in my area. One..." + (show)

@betsyhase and all... Good for you! Perhaps a follow-up call to your PCP for a consult referral from him will speed things up a bit. Yes, he need to understand how this is affecting you, daily and overall. Important to write down your symptoms before speaking with him or his staff so you are sure to get everything said. Also, ask to be put on the wait list for the first available appointment with the Rheumatologist. Use those words. They will understand you 'know what you're doing' and really need to see this new doc.

My advice after years of struggling with the systems of several medical facilities!!!
Blessings, Elizabeth

ess77 - Elizabeth | @ess77 | Apr 12 12:24pm

In reply to @elizabethannr "@ess77 Well it was not perfect, of course. My ankles did swell about halfway through so..." + (show)

@elizabethannr and all... But, sounds like you did pretty well. You are right, you were blessed to avoid the struggle or flights and traveling. That surely increased your chances of a better outcome. What joy to mark off that bucket list!
I went to London several years ago and got ill on the flight from the air... And, naturally couldn't walk well for a couple of days due to the swelling. I didn't know then what I've learned since about traveling wearing compression stockings, different shoes, protecting the breathing on planes, staying active on flights with walking, etc., and taking preventative meds before and with me while traveling.

When I returned from that trip, I was fairly ill for several weeks. Loved the trip and glad I went, but today I would do it differently. Of course, today I wouldn't begin such a trip!

Blessings, Elizabeth

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