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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 Hopefully it's just your adrenal glands needing time to get fully active again. I just googled how long it takes to recover from taking prednisone for 6 months, and it says it typically takes several weeks to several months, and full recovery can take up to a year. I googled the same question for 12 months, and it said basically the same thing.
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2 Reactions@jeff97
When you google more than a year on Prednisone, you get something different. It is no wonder doctors want us off Prednisone within a year. Generally, I don't think there is any way to predict how long it could take. My endocrinologist said for me to stay on 3 mg or less for "as long as it takes.'" Even after I discontinued Prednisone, my endocrinologist wouldn't predict what would happen.
I googled 12 years on Prednisone and got the following.
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"Adrenal recovery after 12 years of prednisone is a slow process, typically taking 6 to 12 months, though it can sometimes take up to 2 years or longer due to severe gland atrophy. After long-term use, the adrenal glands require a very gradual, doctor-monitored taper to resume natural cortisol production.
Key Considerations for Long-Term Recovery:
Variable Timeline: While 6–12 months is common, some studies indicate recovery can take up to 36–51 months in rare cases of severe suppression.
Risk of Permanent Damage: Very long-term, high-dose use increases the risk of permanent secondary adrenal insufficiency, although many patients do recover over time.
Symptoms of Low Cortisol: During recovery, you may experience fatigue, dizziness, nausea, or muscle weakness.
Monitoring: Doctors use morning cortisol tests or stimulation tests (like the ACTH stimulation test) to check if your adrenal glands are producing enough cortisol on their own.
It is crucial to work closely with an endocrinologist to manage this process, as you may need to switch to a physiological dose of hydrocortisone while tapering off the prednisone to allow your system to recover."
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2 ReactionsI’m probably feeling medical PTSD. When I was first diagnosed and on prednisone I felt like I could still be my former self … exercise to my fullest. But there was a price to be paid / the realization of not being able to get out of bed the next day without debilitating pain. Then came the pain meds which I realized caused stomach issues.
I feel like you are “darned if you do, and darned if you don’t “ when you’re in this conundrum.
I decided I would do as much as I felt comfortable doing, just gentle movement and walking.
It was enough just to get up in the morning, wondering how I would feel that day. It was a learning curve.
I’m newly off prednisone so I will take things a day at a time.
I have my rheumatologist appointment next week so hopefully I’ll see where I stand with my labs.
Thanks for your input!
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1 Reaction@jeff97
Yes I am hoping… and I will try to be patient, which isn’t my strong suit!😏
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1 Reaction@caroljeand
"It was enough just to get up in the morning, wondering how I would feel that day."
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I had to rest after getting out of bed. A shower was exhausting and I had to go back to bed.
@dadcue That sounds difficult and unpleasant. I've read that some people's adrenal glands shut down and never recover. I guess the biologics really are important for getting people off of prednisone faster.
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1 Reaction@jeff97
"I guess the biologics really are important for getting people off of prednisone faster."
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If a biologic works and allows people to get off prednisone then that needs to be encouraged. With the often held belief that Prednisone is the "only option" and the "slower the taper the better" then things aren't likely to change very soon.
I would take issue with the idea that people aren't taking enough prednisone if they have any pain at all. "No pain" is not the best goal to have. Withdrawing from any medication can be a painful experience. I was told to expect some pain.
There is an abundance of research that says joint pain, muscle aches, and fatigue are common and expected symptoms of prednisone withdrawal and not necessarily a sign of an insufficient prednisone dose. I can confirm when the body stops relying on external steroids and the adrenals start natural cortisol production again --- the withdrawal symptoms are aches, stiffness, and discomfort similar to PMR.
When symptoms aren't like the symptoms you had when PMR was originally diagnosed maybe it is better to think that something else might be happening. I used to read recommendations to increase prednisone for "niggles of pain." I wasn't sure what a niggle was because what I experienced didn't seem like a "niggle."
I think it is ironic that the word "niggle" comes from Scandinavia and the word originally meant to do something ineffectually. It reminds me of PMR and Prednisone tapering.
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1 Reaction@dadcue People that only have PMR can choose how much pain they want to live with. If you have GCA with or without PMR, you can't take a chance on letting the GCA get back out of control. The GCA is like burning embers. If you let it flare, it can do a lot of damage.
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1 Reaction@jeff97
I have never been diagnosed with GCA ... only uveitis. I don't know precisely how many uveitis flares have happened because I lost count at 30. Many times the flares were panuveitis.
"Corticosteroids are the primary treatment for panuveitis. They’ll help bring the inflammation down to protect your vision and also treat your discomfort. This is the first priority when treating panuveitis.
Your provider may prescribe steroid pills, steroid eye drops or a steroid injection into your eye — or all of the above, depending on your condition. Some people may need to take them on a long-term basis."
https://my.clevelandclinic.org/health/diseases/panuveitis
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Part of the reason I'm still on Actemra is because uveitis will likely flare up again with no treatment. My ophthalmologist doesn't think Actemra is the best biologic to prevent flares of uveitis and says, "it is just a matter of time until it does." I know 60-100 mg of Prednisone will be prescribed whenever uveitis flares up again. Until it flares again, I would rather stay on Actemra.
Fortunately when I report uveitis symptoms -- I am usually seen within an hour. My ophthalmologist reassures me it isn't GCA.
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1 Reaction@dadcue I spent 6 weeks at 60 mg, and then 6 more weeks tapering 5 mg every 2 weeks to get down to 40. Those 12 weeks were really unpleasant. I felt like a zombie the whole time from the lack of sleep plus recovering from the GCA and PMR.
40 for me was a big threshold where prednisone became more tolerable.
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