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Prednisone Taper Stories
I will be under the guidance of Rheumo to taper Prednisone which is presently 14 mg down from 15 mg. We tried the fast track of 12.5 mg x 3 days, then 10 mg. Symptoms returned. Tight glutes, pain down back of thighs and behind knees along with several hours of morning stiffness and limited mobility. I'd really like to get an idea from those who have successfully tapered if the goal is to be pain-free as opposed to a manageable level of pain or maybe somewhere in between? I'm 73 and I do not have a history of pain or mobility issues. And I was pretty limber. It's new to me to have to struggle to bend to pick up something off the floor. I do have a fair amount of pain at night while trying to sleep, mainly in one hip. And it seems that PMR has heightened my existing neuropathy symptoms.
I will say that none of this is as bad as it was when I went to my PCP for help. I'd appreciate hearing your stories.
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@dadcue
Good description 👏👏👏
@jeff97
My uveitis flares were mostly unilateral. The majority of the flares were only in my left eye. My right eye was mostly left alone and unscathed.
My first time being on doses greater than 60 mg was different. I was convinced that I didn't need to sleep anymore --- I kept myself very busy. I could spend hours trying to balance the checkbook but never could get it balanced. I'm thrifty but suddenly buying everything seemed like a good idea.
I felt invincible on 80 mg even though I couldn't see my hand in front of my face.
On 100 mg, -- I confidently told my ophthalmologist that my eye was a lost cause because I was blind in my left eye. I told him not to worry about it because I felt great. My ophthalmologist shined a very bright light into my left eye and asked me if I could see anything, All I could see was diffuse white light but that was enough for my ophthalmologist to say I wasn't blind yet.
Fortunately my eye responded to 100 mg of Prednisone and my ophthalmologist said to taper off as soon as I could because he didn't want me to feel too good. My eye continued to improve and I was able to taper off Prednisone again in a couple of months.
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1 Reaction@tweetypie13
This all took place over a conversation, of praise, thank yous etc.
Update…..today saw Rehumy…..🎂 to me…. 🥂
Stated/plead my case….to 🛑 Kevzara
Good blood work for months
Pain free for ages
2 yr anniversary of onset PMR was like GREAT
11 months on Kevzara
Last 4months at 3 wk interval and no pain (why not give it a try?)
What more of a taper is there really to do?
Healthy active and 79yo female way ahead of the average patient at my age.
No other medical issues.
Dr……Ok…..🛑 Kevzara, re test blood 2 months (5/4)
Assuming no issues
Re test blood 2 months ( 7/5 )
Follow up appt 7/15
Lesson I continue to learn is…
YOU ARE YOUR OWN ADVOCATE.
I did my homework, was prepared….
Thx to you all for your support and I’m going to continue my support to you.
J
@tweetypie13
Good luck ... I think you should go for it. The follow-up labs and visits sound reasonable.
Don't expect any sudden changes. It takes a while for Kevzara to be eliminated from the body so if your symptoms return it should only be gradual.
"Kevzara Half-Life & Duration
Half-Life: The terminal half-life is concentration-dependent, measured at approximately 8 days for the 150 mg dose and 10 days for the 200 mg dose at steady state. Some sources indicate a longer, average elimination half-life of 21 days at steady state.
Time to Clear the Body: Following the last steady-state dose, it takes roughly 28 days (for 150 mg) to 43 days (for 200 mg) for the drug to reach nondetectable levels."
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I have experience with stopping Actemra but not in a very controlled way. Actemra was "interrupted" once during Covid because of a shortage. It was 6 months before supplies improved. I had to go back on Prednisone again after about 3 months from my last injection of Actemra. My symptoms weren't that bad but my inflammation markers were increasing.
My other experience was more of a "trial" just to see how long I could go without an injection. I gradually stretched it to almost 4 weeks but I couldn't stand the increasing lower back pain.
A synovial cyst formed on my lumbar spine so surgery was being planned. I needed to be off Actemra for a month before surgery and a month after surgery but that wasn't going to happen with Actemra injections.
The idea was to switch to a monthly infusion of Actemra with the hope I could go 2 months between infusions with surgery in the middle. After Actemra infusions were started the synovial cyst on my lumbar spine was reabsorbed. It could have been a coincidence but it is rare for a lumbar synovial cyst to be spontaneously reabsorbed. In any case, surgery was postponed.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11278635/
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The surgeon said the synovial cyst might recur so the surgeon was still recommending surgery to stabilize my lumbar spine. I advocated for myself and refused surgery because the pain was gone. The agreement I made with the spine surgeon was that I would call when I was ready for surgery. That agreement was made almost 4 years ago and I'm still not ready. I'm more inclined to stay on the Actemra infusions because it seems to have some additional benefits besides treating PMR.
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4 ReactionsMike, your input is most helpful.
@pah17
I had the same issue, ie, not really knowing how much pain was acceptable….my doc was of no help whatsoever…he recommended Tylenol which doesn't touch the pain!
I joined another forum HealthUnlocked…. PMRGCAuk which is run bu actual PMR sufferers. I got a definitive answer to up my pred dosage from 5mg to 10mg becuse i had tapered way too fast! Wow! I have never felt better since i was first diagnosed and been taking prednisone!
Anyway, check out their forum…they are very kind and helpful people!
Welcome @gypsyrozbud, We also have a lot of great members here on Connect that are PMR patients with a lot of experience which keep our PMR Support group running pretty well. If you haven't seen this discussion, you might want to take a look:
-- How to Slowly and Safely Taper Off Prednisone but ... no set rules.
https://connect.mayoclinic.org/discussion/how-to-slowly-and-safely-taper-off-prednisone-but-no-set-rules/
My rheumatologist was a great help to me when it came to tapering. Basically telling me that everyone is different when it comes to acceptable pain when tapering and that is determined by the patient. For me, it was something less than 2 on a pain scale of 0 to 10. He suggested I keep a daily journal with my level of pain when I woke up in the morning along with my dose of prednisone for the day. If it was time to taper to the next lower dose and my level of pain was above a 2, then I either went a few days more to see how I felt or if the pain was more I increased my dosage by half of my previous taper down amount.
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2 Reactions@pah17
I want to say thank-you for posting this topic. It triggered an interesting discussion.
There isn't any way to taper off prednisone that has been shown to be superior to other ways to get off prednisone. It was very easy to increase my prednisone dose when I couldn't tolerate the pain. The hard part was tolerating enough pain to allow me to taper off prednisone. I still had residual pain when I tapered off Prednisone.
I rarely take anything else for pain but I'm not opposed to taking "pain medication" when I need to. My rheumatologist asked me if I needed something for pain after I discontinued prednisone. When I said Actemra controlled my pain, I was referring to PMR inflammation and not some other types of generalized pain. My rheumatolgist understood what I meant which was why she offered me something else for the generalized pain which I said was "tolerable."
I went back to what you originally posted. I think this is the main question that you asked:
"I'd really like to get an idea from those who have successfully tapered if the goal is to be pain-free as opposed to a manageable level of pain or maybe somewhere in between?"
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You have received a lot of feedback from many people. What do you think? I would emphasize discussing your options with your rheumatologist. Communication is key but not all rheumatologists communicate as well as the following one.
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5 ReactionsI am relatively new to PMR. Diagnosed finally in May 2025 after suffering for 6 months, seeing endless healthcare providers, chiropractors, physiotherapists, acupuncturists, massage therapists, even an osteopath!
I had immediate relief upon taking 15 mg prednisone although I still had some pain, it was at least bearable comparatively. I carried on thinking that some pain was inevitable and tapered as instructed by my family doctor by the time I got to 5 mg the pain became unbearable once again. Went back up to 10 mg
and started feeling better than I ever had! FTER 2 months of being pain free I have tried to taper by .5 mg but now cannot psychologically handle the pain and am back up to 10 mg.
I do not have a rheumatologist, my doctor is closing his practice and I will no longer have a primary care physician which is causing me some stress to say the least!
@dadcue so far I'm quite satisfied with my Rheumatologist. Since there is still concern about GCA in my case, I don't expect that he will taper me off 40 mg. Prednisone right away.