1. < Polymyalgia Rheumatica (PMR)

PMR: Are there treatment alternatives to Prednisone?

Posted by ronhonn @ronhonn, May 20, 2020

Hi, all. I'm wondering if anyone is finding any alternatives to Prednisone in treatment of PMR?

I've been on the PMR/Prednisone train for about 6 months now (was in pain and stiffness for a year or two before but just thought I was "getting old"), being treated through Rheumatology at Shands Hospital (Great people, like Mayo, I'm sure.) in Gainesville, FL. I started at the high dose of 60 mg, it was amazing--within days I felt like I was invincible, having delusions of grandeur due to "Prednisone Psychosis" (It's a thing. And I ride it for all it's worth. 🙂 )
--and launched into crazy lucid dreams and auditory hallucinations--honest to God, one night I heard Wolf Blitzer from CNN standing at the foot of my bed and in a clearly audible voice say: "Right." -and I was up for the night and most nights after. In fairness to my brain, I watch The Situation Room sometimes, so I should've seen that coming.

I was only sleeping, like 1-2 hours a night, but had incredible energy. My nocturnal meanderings included a voracious appetite--for which I tried to stave off weight gain by eating large quantities of vegetables. My wife refers to me as "The Were-rabbit", with appropriate emojis. And with my morning evacuations I could fertilize half of England. I've retained fluids to the point that I look kind of like a squirrel with a mouthful of acorns? Only without the benefit of said nutritional content. I look like--if Alfred Hitchcock and Winston Churchill had a love child? I would be that child.

These days, I've tapered down to 15 mg/day, and the pain and stiffness are returning. Now I look like Winston Churchill/Alfred Hitchcock (Where did my chin go? I distinctly remember having a neck.), only I'm dragging out my cane again (Okay, that's a little Churchillian, at least) to get up and move around.

If I sleep 5 hours at a stretch, I call that:
"Boy, I'm sleeping the whole day away!"

Fortunately for me, I'm teaching remotely via Zoom, and my students are all so kind as to not ask what happened to my chin. Some days, I can't even remember if I was wearing pants. They love me for the madman that I am.

As I consider increasing dosage and heading back into Prednisone Psychosis land, I wondered if there's an alternative to allow me to hop off the train?

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

flymetothemoon | @flymetothemoon | Sep 3, 2022

Pretty funny. Maybe the shows you are watching are to blame. Just kidding. Why 60 mg to start that is pretty high. My sed rate was 80 when I first was diagnosed and I started on 20. It's a long journey for sure. I'm down to 1/2 mg after 3 years and I'm feeling it. Next week I see my Rheumatologist and hoping blood tests are ok. Developed many issues from this Prednisone. Elevated blood sugars, bone density loss and all the things you mentioned. I also am on antiseizure meds. Fun times, but I get my 20 miles of walking in a week and help with the 5 grandkids despite the aches and pains. Hoping this curse disappears on its own. My husband checks my eyes every few months, since he has a lot of patients with issues from this. Feel better.

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christi48 | @christi48 | Sep 4, 2022
In reply to @minijohn "Hey mikeshell, After dealing with a great deal of discomfort in my upper legs and upper..." + (show)
@minijohn

Hey mikeshell,
After dealing with a great deal of discomfort in my upper legs and upper torso for a number of months, I was eventually diagnosed with PMR in July 2020. I received almost immediate relief from a 20mg dose of prednisone and started a 10-month taper. Fortunately I experienced only minimal side effects from the prednisone (mostly some weight gain). Near the end of my taper, some of the discomfort returned, but not nearly at the level I had experienced earlier. About a month after weaning off the prednisone, I began to experience mild headaches and some jaw discomfort. After doing some research, I decided I should see a rheumatologist, made the appointment, and within days was diagnosed with Giant Cell Arteritis in June 2021. At that point I started another 10-month prednisone taper and also began receiving monthly infusions of Actemra. If you would like to connect with others in your situation, I would also suggest you visit: https://www.vasculitisfoundation.org

Jump to this post

This is scary!

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Mentor
John, Volunteer Mentor | @johnbishop | Sep 6, 2022

I thought I would share this article that I found today for others that may be looking for alternative treatments for PMR.

-- What non-pharmacological treatments do people with polymyalgia rheumatica try: results from the PMR Cohort Study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8800888/

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ozblossom | @ozblossom | Oct 23, 2022

Success with any meds other than prednisone? Diagnosed Feb ‘22 with classic symptoms limited to shoulders and upper arms. Started w 40 mg prednisone for only a week and titrated down to 20mg. Heave been as low as 9 mg, however symptoms creep back in and labs go up - latest CRP 11.4 and Sed rate 9. Currently on 10mg, however still symptomatic w pain ranging 2-6 during the day. Sleep interruption w discomfort as well. Is anyone prescribed anything other than prednisone? No current symptoms that would suggest GCA - getting full RA work up this week. My symptoms began 10 days following Covid booster last fall, so I’m hesitant w flu vaccine and 2nd booster as well. Appreciate any feedback or guidance.

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2 replies
marieameehan | @marieameehan | Oct 23, 2022

Hi all,
Has anyone have had a less invasive treatment than Methylprednisone ???

My bones are breaking down and I desperately need an alternative !
Also, has any one tried Algaecal for bone crumbling ??
Thank you, Marie.

REPLY
3 replies
Amanda Roe | @amandajro | Oct 23, 2022
In reply to @ozblossom "Success with any meds other than prednisone? Diagnosed Feb ‘22 with classic symptoms limited to shoulders..." + (show)
@ozblossom

Success with any meds other than prednisone? Diagnosed Feb ‘22 with classic symptoms limited to shoulders and upper arms. Started w 40 mg prednisone for only a week and titrated down to 20mg. Heave been as low as 9 mg, however symptoms creep back in and labs go up - latest CRP 11.4 and Sed rate 9. Currently on 10mg, however still symptomatic w pain ranging 2-6 during the day. Sleep interruption w discomfort as well. Is anyone prescribed anything other than prednisone? No current symptoms that would suggest GCA - getting full RA work up this week. My symptoms began 10 days following Covid booster last fall, so I’m hesitant w flu vaccine and 2nd booster as well. Appreciate any feedback or guidance.

Jump to this post

Hello @ozblossom and welcome to Mayo Clinic Connect.

You will notice that I have moved your post into an existing discussion which you can find here:
- PMR: Are there treatment alternatives to Prednisone?: https://connect.mayoclinic.org/discussion/alternatives-to-prednisone/

I did this so that you may connect with members such as @flymetothemoon and @johnbishop who may be able to share more with you based on their experiences.

When do you start your RA work up this week?

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1 reply
Amanda Roe | @amandajro | Oct 23, 2022
In reply to @marieameehan "Hi all, Has anyone have had a less invasive treatment than Methylprednisone ??? My bones are..." + (show)
@marieameehan

Hi all,
Has anyone have had a less invasive treatment than Methylprednisone ???

My bones are breaking down and I desperately need an alternative !
Also, has any one tried Algaecal for bone crumbling ??
Thank you, Marie.

Jump to this post

Hello @marieameehan and welcome to Mayo Clinic Connect. It is good that you have reached out and joined Connect.

You will notice I have moved your post into an existing PMR discussion, which you can find here:
- PMR: Are there treatment alternatives to Prednisone?: https://connect.mayoclinic.org/discussion/alternatives-to-prednisone/

Members like @flymetothemoon @ozblossom and @johnbishop are in this discussion and may be able to come in and share more with you.

What recommendations have you got from your doctor at this point?

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Mentor
John, Volunteer Mentor | @johnbishop | Oct 24, 2022
In reply to @marieameehan "Hi all, Has anyone have had a less invasive treatment than Methylprednisone ??? My bones are..." + (show)
@marieameehan

Hi all,
Has anyone have had a less invasive treatment than Methylprednisone ???

My bones are breaking down and I desperately need an alternative !
Also, has any one tried Algaecal for bone crumbling ??
Thank you, Marie.

Jump to this post

Hi Marie @marieameehan, I would like to add my welcome to Connect along with @amandajro and others. I can understand your concern and if I were in the same situation I would be looking for alternatives. I upped my intake of more foods with calcium and added a calcium supplement but have not tried AlgaeCal. There is another discussion on the supplement that you might want to read through.

-- Osteopenia, Osteoporosis: Anyone used AlgaeCal, strontium citrate?
https://connect.mayoclinic.org/discussion/question-5/
@tsc may have some thoughts on alternatives to Methylprednisone and how to improve bone health. Have you had a chance to discuss your concerns with your doctor?

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Oct 24, 2022
In reply to @ozblossom "Success with any meds other than prednisone? Diagnosed Feb ‘22 with classic symptoms limited to shoulders..." + (show)
@ozblossom

Success with any meds other than prednisone? Diagnosed Feb ‘22 with classic symptoms limited to shoulders and upper arms. Started w 40 mg prednisone for only a week and titrated down to 20mg. Heave been as low as 9 mg, however symptoms creep back in and labs go up - latest CRP 11.4 and Sed rate 9. Currently on 10mg, however still symptomatic w pain ranging 2-6 during the day. Sleep interruption w discomfort as well. Is anyone prescribed anything other than prednisone? No current symptoms that would suggest GCA - getting full RA work up this week. My symptoms began 10 days following Covid booster last fall, so I’m hesitant w flu vaccine and 2nd booster as well. Appreciate any feedback or guidance.

Jump to this post

Hi @ozblossom, I would like to add my welcome to Connect along with @amandajro and others. In my two experiences with PMR flares, prednisone provided relief from the pain symptoms but the key for me was tapering slow. The first occurrence of PMR took me 3 and half years to taper off and the second time which was following a 6 year remission took 1 and half years to taper off.

Here's an article that may help you and others that may be looking for alternative treatments for PMR.

— What non-pharmacological treatments do people with polymyalgia rheumatica try: results from the PMR Cohort Study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8800888/

One of the best tips I had from my rheumatologist was to keep a daily log of my prednisone dosage and pain level. If when it was time to taper down to a lower level and my pain came back, I would go back to the previous level or half amount I tapered down for a few days to see if that would get rid of the pain. He basically told me to listen to my body when tapering.

Do you keep a daily log for pain levels and dosage?

REPLY
1 reply
ozblossom | @ozblossom | Oct 24, 2022
In reply to @johnbishop "Hi @ozblossom, I would like to add my welcome to Connect along with @amandajro and others...." + (show)
@johnbishop

Hi @ozblossom, I would like to add my welcome to Connect along with @amandajro and others. In my two experiences with PMR flares, prednisone provided relief from the pain symptoms but the key for me was tapering slow. The first occurrence of PMR took me 3 and half years to taper off and the second time which was following a 6 year remission took 1 and half years to taper off.

Here's an article that may help you and others that may be looking for alternative treatments for PMR.

— What non-pharmacological treatments do people with polymyalgia rheumatica try: results from the PMR Cohort Study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8800888/

One of the best tips I had from my rheumatologist was to keep a daily log of my prednisone dosage and pain level. If when it was time to taper down to a lower level and my pain came back, I would go back to the previous level or half amount I tapered down for a few days to see if that would get rid of the pain. He basically told me to listen to my body when tapering.

Do you keep a daily log for pain levels and dosage?

Jump to this post

Thank you John. Yes, I have started to keep a daily log for pain level, activities that may have increased pain that day, coverage level w Tylenol/Motrin, and sugar/carb/wine intake to track any correlation. RA labs completed last week w rheumatology appt this week to discuss next steps.

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