Prednisone tapering: How did you do it pain free?

@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

I've been on prednisone since February 25. My rheumatologist started me on 15mg prednisone after getting the first results from my blood work. Three weeks later I was diagnosed with PMR and because 15mg was only taking the edge off the pain, I was bumped up to 25mg. For two days I felt great but then the ache in my shoulders returned but at a much lower level and I had pain in my left hip and right knee. After about two weeks I started feeling full relief again but I still woke up with shoulder and hip pain until my prednisone kicked in. My shoulders would ache by the end of the day after doing light chores around the house. It's still difficult to do even the simplest things in the evening because of my shoulders feeling achy and weak. Last week I started getting horrible acid reflux after everything I ate and was taking Tums all day. My rheumatologist was on vacation so I started splitting my prednisone to 20mg in the morning and 5mg in the evening. That worked. Yesterday, my rheumatologist cut me down to 20mg. So far I don't feel any difference. Maybe splitting my dose helped. I'm going to do the same thing later this week by doing 15mg in the morning and 5mg in the evening. I see my rheumatologist again next week. I don't feel like I've ever been totally pain free for more than a couple of days on prednisone. My shoulders always have an ache to them, but I'm starting to feel more side effects of prednisone so I'm willing to put up with a little pain and discomfort, although I feel severely limited in what I'm able to do because of my shoulders.

@kjoed53 ....I taper to a tolerable level which is 3 or less.......if the pain goes above 3 when awaking in the morning I increase by .5 mg. for three days and start the taper again. I had some shoulder issues before PMR but use them as my barometer when to taper. I also split my dose which is now 6 mg. , 4 mg. with morning meal and 2 mg. with evening meal. Very important to have plenty of food in the stomach when taking Prednisone. Also do not take antiacids with prednisone and separate them by 2 hours or more or it will weaken the medication. A PPI will help with protecting your stomach but there is also issues with taking them long term because this will not let you properly digest all of your food due to decreased stomach acids. These are details I had to learn on my own because my Rummy did not take the time to go over important details, which by the way will be different for each person.

@ess77
Yes, I am going to start writing everything down so I can be clear about all of my symptoms. Right now he is just going by my blood results. I am better but function is limited. I am still pretty much house bound. If I try even a short trip shopping, I am down/house bound for a few days.
Very frustrating 😞

I am 83 and it was too fast for me to drop down 1 mg per month. I started at 25 mg in December 2024. I had a flare at 7 mg and he put me back up to 9 mg. I didn't like that. Since then I am doing a .5 mg, drop, with his permission, every 2 to 3 weeks. It is much slower but now I am at 5.5 mg. This is the point where they say you can really start to feel the pain because your adrenals are starting to wake up. So slow dosage drop or not, that's what I am doing. Truly, I am getting creaky when I wake up, and it takes about 45 minutes and a very strong cup of coffee, to get going. Plus an extra strength Tylenol if I really, really need it. But I would rather weather it out with some pain than have to go back up to a higher dosage again, just to encourage myself to do the slower taper. My hair is starting to grow back and my moon face is going down, so fingers crossed. We just came back from a 12-day cruise, which also included 11-hour flights to and from Europe, and weathered it fine, thank goodness.

@elizabethannr and all... What in the world? You were on a 12-day cruise and 11 hour flights?????
My goodness... You are surely doing well. I ccan't travel at all anymore. Not even week-end jaunts to near-by places I enjoy without edema issues and icreased pain, putting me in bed for a day or two. You are remarkable.

Also, with the auto-immune issues and Prednisone, I don't dare get around groups of folks with new germs. I am extremely sensitive to infection and sepsis comes shortly often, so I live a severely isolated life, as most did during Covid. I live that life almost constantly. But, enjoy my flowers and made my upstairs into a nice, comfortable bubble. My outside connections are online, texting, zooming, videos to keep my brain active and vocabulary near... and to stay on top of world events. I learn every day from YouTube about make-up for older women, fierce women! You are one, as am I!

Oh, the .5 mg reduction helps me greatly. Slow is fine now that I adjust my attitude and accept the situation. Slow in this case is ideal... ess

Bless you and may you continue to keep moving and be the healthiest you possible!
Elizabeth

@ess77
Elizabeth, you are an inspiration! Today is my third day back up to 25mg and it's not eliminating the increased pain that began on my four days of 20mg. I intend to stay at 25mg until the pain is mostly gone before I try any taper. I'm also going to discuss options other than prednisone. Things may become more clear after I see the hematologist and find out why my Free Kappa Lt Chains are markedly elevated at 143.7 mg/L (Normal: 3.3–19.4) and my Kappa/Lambda Ratio is 8.21 (Normal: 0.26–1.65). Thanks for sharing your story. My thoughts and prayers are with you!

@elizabethannr If you are on a 3 week schedule you might try what I did when I got below 5mg. During week one I would alternate between the lower dose and then the higher dose two to three times during that week. Then weeks 2 and 3 stay on the lower dose. I hit my pain wall around 3.5mg. You could also go to a 4 week schedule since you are in the final lap and that is the challenge lap for your adrenals.
I have tried more than once to get off of prednisone and it eludes me. I was recently Dx with GCA yet never had any symptoms so we are now trying to find me a biologic I can tolerate.
Fighting PMR unfortunately seems to become a full time job. I go on 2 cruises a year and have started looking for cruises that depart and/or return to a US port. The Panama Canal was my choice this year. My third time thru and still as fascinating as the first time.

I've been decreasing by 1mg every 10 days. Started at 25mg, got to 14mg, but pain returned. Not as bad as beginning, but its hindering my daily routines again. Went back to 14.5mg. Hoping that helps, but after 2nd day there, not much better. Im bummed because it was going so well. I'm wondering also about a biologic like kevzara to help get off prednisone.