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Any Tips For Tapering Off Prednisone?
This is my third attempt to taper off of Prednisone or at least down to about 4 mg since my rheumatologist said that I wouldn't have all of these gruesome side effects at that dose and could stay on it for life if necessary. The thing is that as soon as I get down to 7 mg I start to flare. Today is my 3rd day on 7 mg and my shoulders and lower back are so stiff and painful it hurts to move.
I'm really discouraged. Have followed the taper schedule my rheumie gave me and stayed at each dose for 2 weeks before dropping down another mg. Any tips or advice on how to taper without having a flare would be much appreciated.
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I tried injections and facet nerve elations for my LBP with no relief, the only thing that seemed to help was the prednisone. I have been on Kevzara for about a year now and I have been able to ween off the prednisone but back and hip pain persists, I’m presently in Tijuana for stem cell injections to hopefully ease my back and hip pain. Good luck with your journey.
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1 Reaction@dadcue
Excellent response to the tapper challenges when going below 7 mg. I'm two months in and down to 7 mg. with no flares. My rummy suggested continue to drop from 1 mg. every two weeks to every 3 weeks. All my labs are showing I have no clinical symptoms and I'm not feeling any physical symptoms. I'm tempted to convert from every three weeks to two weeks go down to 6.5 mg. for the third week and then down to 6mg and then continue with the same protocol. Seems to me the worst case scenario is if I start to show some symptoms is to bump back up to 7 mg. and stay on for the 3 weeks recommended until down to 0 mg. Your thoughts appreciated.
@ds1
I'm not the best person to ask. I had no success tapering my prednisone dose below 7 mg. In fact, my flares were predictable whenever I reached 7 mg. It didn't matter what tapering regimen I tried. I told my rheumatologist in no uncertain terms that I refused to make another attempt to taper off Prednisone. I wanted an alternative to prednisone except that I didn't think there was an alternative. I planned on taking Prednisone for the rest of my life.
My rheumatologist countered my refusal to taper off Prednisone by saying that Prednisone for the rest of my life wasn't a good outcome. One day an alternative to prednisone was offered IF I was willing to try it. The alternative was a biologic called Actemra (tocilizumab). I didn't think Actemra would work but I committed to trying it in spite of the negative feedback I received.
The rest is history. I was able to taper off Prednisone for the first time in 12 years. I had some setbacks along the way but Actemra allowed me to easily get past the 7 mg barrier. The next barrier was at 3 mg when my cortisol level was too low. I had to stay on 3 mg for a long time until my adrenals recovered.
Two things had to happen. A medication that didn't suppress my adrenal function replaced Prednisone and kept PMR under control. The second step was to remain on a low dose of Prednisone to allow time for my adrenal function to recover. An endocrinologist helped me to understand that the problem with long term Prednisone use was adrenal insufficiency. But first, I needed a different medication that controlled PMR so that I wouldn't need Prednisone.
Thanks to Actemra ... I haven't needed any Prednisone for more than 5 years.
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3 Reactions@dadcue WOW, thank you for taking the time to write this, very helpful. I have to ask the community, is there anyone successfully tapered at very low doses. My last day on 10MG was April 26, 2026. 5MG 27 through May 4. 2.5MG May 5 to 13th. May 14 through today on 1.25MG. My shoulders are pretty sore when waking and it goes away. Should my adrenals not have been producing cortisol for the last month?? I 1.25MG not low enough that one can stop completely? Anyone with experience on this low a dose would you please share? Thank you
@pmrnew What everyone needs to keep in mind when tapering is that prednisone, unlike an antibiotic, does not eliminate the cause of PMR. PMR must burn-out in your system on it's own. Once it has burnt out then you are dealing solely with the adrenal gland concerns that come into play when we taper.
If PMR has not burnt out then we deal with the flare of PMR, i.e. the point where the lowered prednisone dose cannot eliminate the PMR pain. In addition we are dealing with the adrenal gland concerns.
In my opinion the "flare" is really mislabeled. It implies that PMR is revving up when in fact the PMR has been there all along. We have simply reached the point where the dose of prednisone we are taking is no longer enough to manage (cover) the PMR pain. Prednisone is not a treatment; it is pain management while you and your doctor wait for your PMR to burn out. The bio-logics are not cures either, they simply manage the PMR pain without the prednisone side effects.
I do not have a Rheumy who stated that in clear English from the beginning and it took me some time to figure it out on my own. Actually, I had to change Rheumy's 2 months in because my first Rheumy stepped back from practicing due to Covid. Neither of them set me down and explained PMR as the beast it is.
If PMR does not burn out in about 2 years, then I believe you should insist that your Rheumy positively eliminate vasculitis as the source of the pain. Vasculitis is a real problem with real world life challenging problems. The management and treatment for vasculitis is much more complex and involves several doctors to oversee their portion of the problem.
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5 Reactions@jds2123
Did the stem cell injections work at solving you pain?
@pmrnew
You seem to be cutting your dose in half every 7 days. I don't know if that will work or not because it is a fast taper. After you reach 10 mg it is usually recommended to taper by 1 mg per month. As far as 1.25 mg being a low enough dose for your adrenal glands to begin to produce cortisol again... my endocrinologist said 3 mg was a low enough dose if I could maintain that dose for long time. I needed to be on a low dose and allow for time for my adrenals to produce an "adequate" amount of cortisol for my daily needs. Whether or not my adrenals could produce enough cortisol in an emrgency situation was unknown.
The time it takes for the adrenals to "fully recover" depends on many factors. For me, it took 6 months on 3 mg for my cortisol level to improve. It took another year of being off prednisone until I felt like my adrenals were fully recovered. This was my experience after being on prednisone for 12 byears.
There was the issue of PMR pain coming. back when I stayed on a low dose of prednisone. I was taking a biologic while I stayed on 3 mg of prednisone so PMR was well controlled.
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3 Reactions@jabrown0407 Indeed, indeed. Thank you for stating this so clearly. Just, after reading this forum, it has been slowly sinking in, in the last week, that PMR is completely different from pain management, as you say. PMR pain is there with a vengeance when I tapered from 2.5 to 1.25MG. Two years, yuck, that is a long time to be on Prednisone. Thank you
The only thing that helped me with the taper was the biologic Kevzara. I got stuck at 15mg. Then started Kevzara. I am presently at 1mg a day and could never have got there without the biologic. Expensive if insurance doesnt cover it. For some reason mine does.
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1 Reaction@stonewheel I have a Sports Medicine doctor who has offered stem cell treatment to me to treat my chronic bursitis. They are private pay and he clearly admits that the older you are the less likely they will be successful. He said if I were a 20 something patient he could almost guarantee complete success. Unfortunately or fortunately I am not 20 something.
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