Trying to determine long term prednisone versus other prescriptions

Posted by mikeshell @mikeshell, Jul 13, 2023

I have been diagnosed with PMR for 15 months and began my prednisone journey on 20mg daily. I am now currently taking 3mg daily had having extreme fatigue, aches, dizziness, etc. I was able to function better on 5mg daily, but with some similar symptoms. My Rheumatologist wants me to start taking Celebrex long term. My social life includes occasional weekend alcohol, which is not tolerated with Celebrex. I do not want to give that up. My Rheumatologist said that she is "O.K." with me continuing long term prednisone at 5mg daily if that is my decision. My Endocrinologist is telling me no way is that a good decision and that I need to "get off" of prednisone because of the many side effects. I have cardio vascular issues and diverticulitis and concerned about the possible effects of these type of anti-inflammatory drugs. I'm having a hard time deciding what to do ( I lean toward long term prednisone at 5mg daily) versus taking Methotrexate and/or Celebrex or Meloxicam. I was functioning ok while on 5mg of prednisone. I know of other people that have been taking prednisone for long term therapy and seem to be doing fine. Is the risk so great at this dosage that I need to focus on stopping the drug and begin taking other medications that have side effects and limit my social life (the little that I have with this disease?) I also have had neck fusions and prior to my PMR diagnosis I was receiving regular steroid injections to manage the pain. Since I've been taking prednisone for my PMR , I have not needed those injections anymore. Any wisdom and advice is greatly appreciated. I just don't what is the best decision for me. Thank you all very much!

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

@jboylan

I was diagnosed with PMR in April 2015. My symptoms started in the fall of 2014. It was awful. Fortunately, my primary care physician took me seriously when I brought it up in December 2014. I had to wait four months for my appointment with the rheumatologist (she has a great reputation). Fortunately, during the four months of waiting, the pain diminished a tiny bit every week . . . but, it was still pretty bad.

After all the tests, etc., she confirmed PMR and said there wasn't much to treat it except prednisone. This rheumatologist was very honest with me and said there is little known or understood about PMR. I've known too many people that struggled to get off of prednisone and I wanted to avoid it if possible. My primary care physician suggested two Aleve twice a day. That did help, but I was concerned about the long-term consequences. I received no pain reduction with cannabis and CBD products.

I then was chatting with an acquaintance. She has rheumatic arthritis. I had heard RA shared some similarities with PMR. She managed her RA with an herbal supplement, Zyflamend. It's turmeric-based and also contains rosemary and ginger. I purchased some via Amazon and it works well about 90% of the time and I don't worry too much about long-term consequences. If I have a flare-up, I will take two Aleve. I also find movement, moist heat, and massage (with cupping) help too.

I have to be careful with vaccines and limit myself to one at a time with several weeks in between. The most important thing for me was getting a diagnosis beyond someone telling me "You're getting old and creaky."

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I know where you’re coming from on the getting old stuff. During my 40 years as a nurse, I witnessed patients being blown off with that song and dance about age many, many times.

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@bohobama

I was given Tramadol for pain before being diagnosed with PMR. It did nothing.

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Exactly.
I just started on Topamax for the Fibromyalgia and will stay on
Tramadol for now as it can take weeks for the Topamax to begin working. I am excited though because it works on nerve pain which is exactly what fibro is. It's also effective in the prevention of migraines which I get quite a few, up to 15 per month. The other side effect is weight loss so I'll need to be careful with that. I haven't lost any more weight, probably due to the prednisone so that's good.

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@bohobama

I know where you’re coming from on the getting old stuff. During my 40 years as a nurse, I witnessed patients being blown off with that song and dance about age many, many times.

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I was fortunate to have a primary care physician at the time that was the same age as me. I think that gave her a better understanding. Unfortunately, she decided to leave practice and teach at the medical school in the area. I'm satisfied so far with my new primary care physician.

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@vellen

Oh wow. Yes the most important thing as you probably know is to keep the inflammation under control in order to avoid GCA. Aleve and other NSAIDs are not indicated for PMR but perhaps that wasn't known eight years ago.
Are you still under the care of a rheumatologist? Perhaps get a blood test and your inflammatory markers checked for good measure.

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My primary care physician monitors my inflammatory markers. My PMR is under control and mostly tolerable through the use of Zyflamend, an herbal anti-inflammatory . . . with occasional use of Aleve.

Fortunately, my new primary care physician is a fan of Zyflamend as an anti-inflammatory. She was the first medical professional that knew what it was when I mentioned it.

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@jboylan

My primary care physician monitors my inflammatory markers. My PMR is under control and mostly tolerable through the use of Zyflamend, an herbal anti-inflammatory . . . with occasional use of Aleve.

Fortunately, my new primary care physician is a fan of Zyflamend as an anti-inflammatory. She was the first medical professional that knew what it was when I mentioned it.

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I'm glad to hear that it's working for you. I thought eight years seemed a long tine to be dealing with PMR.
I hope my PCP isn't being too optimistic saying I should be clear of in six months!

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@vellen

Though not directed to me, thank you for your thoughtful and informative post. I always enjoy reading what you put forth.

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Thank you! That's so very kind of you to say. I started coming on here more often because my chronic pain and life circumstances (with disability, chronic pain, being a caregiver for my father after he had a severe stroke) just really get me down. It's oddly easier to share compassion with others than it is to share it with myself.

But also it helps sometimes to feel not so alone. Or to have something come out of all this hurt if there's something my family or I learned that might help someone else...and of course to learn from others.

Grateful for you, and all the others here. Thanks.

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I am on Celebrex and turmeric and usually manage the pain without prednisone (low dose Celebrex, 50 mg/twice a day). My husband just had kidney failure and kidney transplant. I asked the nephrologist which was worse on kidneys (celebrex or prednisone) she said prednisone was much worse. May be something for you to consider. I only take prednisone when I have periods of pain not controlled by celebrex and usually for only 2 weeks at a time.

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Can you have fibromyalgia and PMR at the same time?

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@nenie

Can you have fibromyalgia and PMR at the same time?

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Short answer: Yes, unfortunately.

My dad has PMR, and at the moment I don’t believe he has fibromyalgia.

Longer answer and context: But I have seronegative spondyloarthropathy (a different autoimmune inflammatory arthritis), POTS, hyper mobility spectrum disorder, small fiber neuropathy, and central sensitivity syndrome.

The last diagnosis to come was fibromyalgia.

I can’t remember if I mentioned it already in this thread or if it was another one, but the physician who diagnosed me (at Mayo) explained it’s thought to be common with these chronic pain conditions because the long, enduring pain, with the potentially long time it takes to diagnose, treat, and relieve can trigger changes in the way the central nervous system processes pain—resulting in fibromyalgia.

Do you think you have fibro too?

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@mikeshell HI Mike ! i am curious about your comment from 5mg to 3 mg -- how quickly did you taper down ? were you ever at 4 mg ? ( i am now at 10mg /day for next month ,before going to 9 mg) sigh ! Are your "aches" distinguishable from the classic morning stiffness /pain of PMR ? lately pain in my right leg is annoying - but i have NO "PMR" pain stiffness.

do you recognize yourself in one of these cohorts of patients in UK that report pain for range of two years
[Rheumatology (Oxford)
. 2020 Aug 1;59(8):1906-1915. doi: 10.1093/rheumatology/kez533.
Longitudinal clusters of pain and stiffness in polymyalgia rheumatica: 2-year results from the PMR Cohort Study Sara Muller first author ]
Five clusters were identified. One cluster represented the profile of 'classical' PMR symptoms - "rapid and sustained "and one represented sustained symptoms that may not be PMR. The other three clusters displayed a partial recovery, a recovery followed by worsening and a slow, but sustained recovery. Those displaying classical PMR symptoms were in better overall health at diagnosis than the other groups.

have you ever seen the videos in this site ? PMARand IL6.com - go to resources tab and scroll down to listen to john stone and contraindications of prednisone . Why would an NSAID be considered , in place of GC ?
i assume you are familiar with the role of IL6 in PMR? have you asked specifically if you are now a candidate for Kevzara ?
knowing what others are going through sure helps !

Shared files

kez533 muller et al Rheum 2020 (kez533-muller-et-al-Rheum-2020.pdf)

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