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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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@caroljeand It sounds like your adrenal glands have a ways to go yet before they are fully functional. Two weeks after I stopped pred I had a couple of weeks of withdrawal, where I had some mood swings and fatigue. About a month after I stopped I felt my metabolism recover. It took about 4 months for me to feel fully recovered from the prednisone.
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1 ReactionI have been off pred for three weeks, and have lots of new aches and pains. I have severe osteoarthritis in several joints, and also inflammatory arthritis (I’m taking methotrexate and hydroxychloroquine). My rheumatologist does not feel it is a PMR relapse because my pains are not bilateral. I am due for labs next week. My question is: wouldn’t my adrenals have slowly recovered once I got below 5 mg? I did a long slow taper.
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I just came across this information about Seashell. I am newly diagnosed PMR and just started on Prednisone of 12mg two weeks ago via my Primary Care MD. It may take awhile to get into a Rheumatologist. I have had significant relief but I know it can destroy your health long term. I am glad I found this group for first hand knowledge of dealing with this diagnoses.
@prestol Everyone is different. It probably depends on how long you were on prednisone and at what doses. I started at a high dose for GCA (60 mg), and took prednisone for a year. The only symptoms I had of prednisone withdrawal were after I stopped. Fortunately those symptoms only lasted a couple of weeks. Otherwise, like I said previously, I felt back to normal about 4 months after I stopped.
Hello. And greetings from a fellow pain sufferers! Several doctors told me for the last 10 years that I have Fibromyalgia. Of course some doctors said Fibro isn't real and suggested anti-depressants. Just a female thing :> ( I almost immediately gained 11 pounds of belly! I am 5 ft. tall and weighed 100 before prednisone (last April 2025.) The Prednisone has also contributed to severe osteoporosis, which I never had before. And this in spite of collagen, calcium, etc. Plus following a great diet! Down to 6mg and trying. Suggestions?
@caroljeand Hello! First of all, I agree that getting off Prednisone (I call it the Devil Drug - because of all the potential damage it can do to your body.) If you see my note, please tell me about Kevzara. And, by the way, 78 isn't old!! I bet you are still beautiful : > )
@prestol Hello! My Rheumatologist has never mentioned adrenal issues. I am going to see him next week and you can be sure I am going to bring this up! And mention what drugs you use. So, thank you for your helpful comments!
@betsyhase Can you guide me to information on Seashell treatment? I will also search myself. But I have never heard of this. Thank you.
@jeff97 i Jeff! Thank God GCA is one thing I don't suffer from! I am sorry you had to deal with that. I am down to 6 mg/day, but still hurt like crazy. So, you mention withdrawal symptoms. Can you elaborate? Thank you.
@prestol
"My question is: wouldn’t my adrenals have slowly recovered once I got below 5 mg? I did a long slow taper."
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Dose and duration and perhaps "cumulative dose over time" are the variables that need to be considered. When you ask artificial intelligence it has little to do with how slowly you taper.
Artificial intelligence says:
"Here is why your adrenals might not have recovered fully despite a slow taper, and what you need to know:
5 mg is the "Critical Zone": Once you get below 5 mg, you are in the range where your adrenal glands are required to produce their own cortisol. If they are still "sleeping" (suppressed by the previous high doses), you will experience withdrawal symptoms, not because the taper was too fast, but because your body is not yet producing enough of its own cortisol.
Long-Term Suppression Takes Time: If you were on steroids for a long time (months or years), your adrenal glands can shrink (atrophy). It can take 6–12 months, and sometimes up to 18–24 months, for your HPA axis (hypothalamic-pituitary-adrenal axis) to fully recover."
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It just depends what you want to believe about how you feel. Symptoms are important but you need to know precisely what is causing the symptoms. You can't believe all pain is PMR and automatically increase your prednisone dose. People are too inclined to do that.
I know people promote the idea that tapering too quickly is the only problem we encounter. I can assure you that tapering too quickly was only part of a much bigger problem. The biggest part of the problem I had was long duration (12 years for PMR alone but "decades" for some other conditions) higher doses (over 20 mg most of the time) and a massive cumulative dose. Some of the conditions I had required 100 mg occasionally. PMR only needed 20 mg but most people have other conditions to contend with that also respond to Prednisone. It is false to think all pain that responds to Prednisone is "most likely" PMR pain.
My endocrinologist was surprised that I had a measurable cortisol level albeit low when I had a morning level checked. I was told to stay on 3 mg of prednisone until my cortisol level improved. I asked how long and the answer was "as long as it takes" but we will re-check another cortisol level again in 6 months. I was told not to taper at all for 6 months. Staying on 3 mg would have been impossible except that Actemra was controlling PMR while I stayed on 3 mg.
My cortisol level was only "adequate" for normal low stress days. Whether or not my adrenals could respond adequately to something stressful was was not certain.
My endocrinologist told me to call her if "anything happened" that was stressful. She added that I didn't need to call her first if I felt that I had to take Prednisone again but she still wanted me to inform her if I needed again "for any reason at all."
I had access to an emergency supply of prednisone.
I have inflammatory arthritis and PMR. Having both is possible and the symptoms overlap. I have a hard time knowing which condition is causing which pain. They can both flare up at the same time or independent of each other. When the inflammation is "systemic" anything can flare up.