1. < Polymyalgia Rheumatica (PMR)

Anyone have discomfort or pain when tapering off prednisone?

Posted by monami @monami, Apr 7, 2022

I am currently on a 3 dose of prednisone. I have some shoulder discomfort that goes down my back on either side. The left side is worse than the right. Anyone else experience back issues? It tends to go away by 3 or 4 pm. Thanks to all! We will get over this thing!

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

tuckerp | @tuckerp | May 29 6:25pm
In reply to @1942marilyne "Thanks for reply and info. I split Dexter Dexter 4 mg 1/2 in am and 1/2...." + (show)
@1942marilyne

Thanks for reply and info. I split Dexter Dexter 4 mg 1/2 in am and 1/2. Pm. Never took it 3 times a day. Today did 4 mg at 11 am. Tomorrow will go back to split dose. Not going back on prednisone. Talk to doctor tomorrow will get Rx 4 mg once a day and split the dose and then will try the taper down I do feel better f
Best in 31/2 years. Thanks again

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If I understand you correctly your taking 4mg Dexamethasone(DEX)

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2 replies
emo | @emo | May 29 10:00pm
In reply to @besmith57 "I wrote to my rheumatologist about taking a water pill. She totally ignored the question but..." + (show)
@besmith57

I wrote to my rheumatologist about taking a water pill. She totally ignored the question but told me to taper down from 7.5 mg to 5mg on alternating days. I still have considerable pain, especially in my back and hips. When I was on 10 mg my back pain was gone. Now it hurts all the time. She told me to take 1 500mg Tylenol once a day. I take 2 Tylenol arthritis pills at least once a day and they don't touch my pain. I know I need to get off prednisone but it seems like I will be in for even more pain on her new schedule. I have dry eye syndrome which I use an eye ointment for nightly. I feel like I hurt from my eyeballs to my knees! I can't stand or walk for any length of time. How do people deal with the pain and depression that comes with it?

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I think you may want to consider tapering more slowly. My dad was at the exact same spot (7.5 mg) and from then on, he had to significantly slow the taper down. We decided it’s one thing to want to get off the prednisone but not at the expense of quality of life. The lower you go, the more you need to slow the taper (or at least that’s how some look at it) because you’re dropping by a greater proportion of the original dosage if you keep the increments the same.

I have chronic pain as well (it’s my dad who has PMR) and the pain and depression is real. Sounds easier said than done but we do what we can to manage the pain as best as possible but then also try to take time for ourselves and find moments of peace or joy… I also have a therapist I talk to who specializes in chronic pain. Wishing you all the best.

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abbeyc | @abbeyc | May 30 8:33am
In reply to @tillysam "I have been on Prednisone since 10/20. I started out at 80 mg and am now..." + (show)
@tillysam

I have been on Prednisone since 10/20. I started out at 80 mg and am now down to 5 mg in the AM and 5 mg in the PM. For a very long time I have complained about my arms, shoulders and neck feeling heavy. My rheumatologist doesn’t know why. Of late, my left arm gets very painful( checked out by my cardiologist-not cardiac related) and sometimes my neck hurts. My rheumatologist wants me to get radiographs. He thinks I can have a pinched nerve. I feel it has something to do with steroids. Actually, quite baffled by this. Has anyone else experienced anything like this?

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Yes I am also going through strange new pains in left arm as I taper off Prednisone and I have furiously been trying to research the cause.
I finally had X-ray done this week waiting for results but I suspect I will need MRI in order to see the muscle/tendons. . I did not do anything physical to cause this.
My gut tells me it’s a steroid damage side effect but I can’t find anything online confirming this.
It would be great if someone knew something about this
I am seeing a lot of similar posts from other steroid users.

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2 replies
art43 | @art43 | May 30 9:51am
In reply to @tuckerp "They keep taking the prednisone. PMR is real . So is the PMR induced from prednisone...." + (show)
@tuckerp

They keep taking the prednisone. PMR is real . So is the PMR induced from prednisone. Life does get better if you can get your body to restart cortisol. PMR is a perfect fit for steroids. Its the only drug that works. Just the prednisone increases blood sugar, increases cholesterol, raises BP, causes eye issues, causes or contributes to gastro issues, gain weight, causes moon face and fatty neck, and you never feel like the same old you without it. Good luck.

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Please explain “PMR induced from prednisone”. Not making a bit of sense to me.

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1 reply
tuckerp | @tuckerp | May 30 12:13pm
In reply to @art43 "Please explain “PMR induced from prednisone”. Not making a bit of sense to me." + (show)
@art43

Please explain “PMR induced from prednisone”. Not making a bit of sense to me.

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I am not good at short response.

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art43 | @art43 | May 30 12:17pm

@tuckerp
Please explain “PMR induced from prednisone”. Not making a bit of sense to me.

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tuckerp | @tuckerp | May 30 12:17pm

Let me send you a clip from Dadcue on this site. He is a true survivor and understands better than me. Most of my longer term experience comes from my wife who I am the caretaker.

Corticosteroids have the effect of suppressing the anterior portion of the Pituitary gland with resultant cessation/disruption of the Pituitary gland in secreting that hormone ACTH. ACTH is the hormone that communicates with the adrenal glands via a negative feedback loop in regulating the production of cortisol. Cortisol is a life essential hormone produced by the adrenal glands. Cortisol is necessary at a cellular level for every cell in the body for basic physiological functioning. Cortisol is also the body’s primary anti-inflammatory reagent.

Prednisone is never discontinued abruptly when (dosage of 5 mg or greater for 2 weeks or longer) for the reason of steroid induced Pituitary suppression. A slow and gradual taper is necessitated to ensure that the Pituitary gland can be coaxed back into function. Not all Pituitary glands are able to successfully “re-boot.” Some Pituitary glands will remain forever suppressed and at a physiological standstill. The longer the duration of continued use of prednisone the higher the risk of acquired secondary AI(Adrenal Insufficiency). Likewise, the higher the dose of prednisone over time the higher the risk of acquiring secondary AI.

Each step down titration in dose is done with the purpose of lowering the blood serum level of circulating cortisol to an uncomfortable level (eliciting symptoms of low cortisol - nausea, severe muscle/joint pain, diarrhea, low blood pressure, low appetite, chills/sweats). Each step down titration in dose is meant to coax the Pituitary gland to “awaken” from its suppressed/retired state. The longer you have been on prednisone would be a negative prognosticator for a successful Pituitary reboot. Most likely, you will need to remain on a replacement level of corticosteroid (hydrocortisone is preferred) for life. You will need to take daily medication to provide for corticosteroid normally produced by the adrenal glands.

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1 reply
tuckerp | @tuckerp | May 30 1:07pm
In reply to @abbeyc "Yes I am also going through strange new pains in left arm as I taper off..." + (show)
@abbeyc

Yes I am also going through strange new pains in left arm as I taper off Prednisone and I have furiously been trying to research the cause.
I finally had X-ray done this week waiting for results but I suspect I will need MRI in order to see the muscle/tendons. . I did not do anything physical to cause this.
My gut tells me it’s a steroid damage side effect but I can’t find anything online confirming this.
It would be great if someone knew something about this
I am seeing a lot of similar posts from other steroid users.

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I sent a response below. I think your gut is right.

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besmith57 | @besmith57 | May 31 7:28am
In reply to @besmith57 "I wrote to my rheumatologist about taking a water pill. She totally ignored the question but..." + (show)
@besmith57

I wrote to my rheumatologist about taking a water pill. She totally ignored the question but told me to taper down from 7.5 mg to 5mg on alternating days. I still have considerable pain, especially in my back and hips. When I was on 10 mg my back pain was gone. Now it hurts all the time. She told me to take 1 500mg Tylenol once a day. I take 2 Tylenol arthritis pills at least once a day and they don't touch my pain. I know I need to get off prednisone but it seems like I will be in for even more pain on her new schedule. I have dry eye syndrome which I use an eye ointment for nightly. I feel like I hurt from my eyeballs to my knees! I can't stand or walk for any length of time. How do people deal with the pain and depression that comes with it?

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I had my blood work done yesterday. Some markers are still off. My doctor is going to put me on Kevzara after being approved. The kevzara scares me My dr. called me yesterday to tell me because I have diverticulosis I could have digestive or bowel issues. I have never had any symptoms of diverticulosis. Has anyone had an issue with this drug? I also take 12 mg methotrexate. I love this site for its information.

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1 reply
Marilyn McFarland | @1942marilyne | May 31 9:45am
In reply to @tuckerp "If I understand you correctly your taking 4mg Dexamethasone(DEX)" + (show)
@tuckerp

If I understand you correctly your taking 4mg Dexamethasone(DEX)

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Yes

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