1. < Polymyalgia Rheumatica (PMR)
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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.

Profile picture for kathyjb
kathyjb | @kathyjb | Mar 10, 2023
In reply to @chris1466 "I am new to this mayo clinic group but I’ve had PMR for five years. I..." + (show)
Profile picture for chris1466 @chris1466

I am new to this mayo clinic group but I’ve had PMR for five years. I am 67 years old and every nine months I would come off the prednisone and then it would come back within 6 to 8 weeks
Then I would start the whole prednisone thing again for another nine months off a couple of months and then it would return

My doctor had me try low-dose naltrexone
I have it compounded and I have been off prednisone and in remission for 7 Months

I take 4.5 LDN daily and drink celery juice 3 to 4 times a week when I can find it organic.

I don’t know if this is something you would like to consider but do some research on the LDN

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Please tell me more. I was just diagnosed. My Dr says prednisone is the only thing he prescribes. But I know coming off of it only causes a rebound and taking it does all kinds of awful stuff to the body. I just DO NOT want to take it. Tell me more about the alternative Ned you are taking, please. It’s the Naltrexzone I’m curious about. Does it have bad side effects? Would love to chat with you about this. I am sooooo in pain and unable to do hardly anything and that is NOT me. Thank you for a reply. Kathy

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kathyjb | @kathyjb | Mar 10, 2023

Just diagnosed with PMR. I absolutely do NOT want to start the cycle of endless prednisone. Does anyone have any positive results without the steroid? What I read here sounds like no one can ever fully get off of them. I don’t want osteoporosis or decreased bone density or weight gain. I would so appreciate from anyone who found another way to manage their pain and stiffness. Thank you.

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sususi | @sususi | Mar 10, 2023
In reply to @kathyjb "Just diagnosed with PMR. I absolutely do NOT want to start the cycle of endless prednisone...." + (show)
Profile picture for kathyjb @kathyjb

Just diagnosed with PMR. I absolutely do NOT want to start the cycle of endless prednisone. Does anyone have any positive results without the steroid? What I read here sounds like no one can ever fully get off of them. I don’t want osteoporosis or decreased bone density or weight gain. I would so appreciate from anyone who found another way to manage their pain and stiffness. Thank you.

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Hi kathyjb, I have PMR and I’m not on prednisone, same as you I don’t want the side effects, my opinion they are serious. I want to try LDN but my GP can’t prescribe it on nhs, probably a private doctor would, meanwhile he has given me nefopam, not started it yet but will give it a try, it does not read as safe as LDN - Low Dose Naltrexone, this is not the same as Naltrexone higher dose.

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redboat | @redboat | Mar 10, 2023
In reply to @kathyjb "Just diagnosed with PMR. I absolutely do NOT want to start the cycle of endless prednisone...." + (show)
Profile picture for kathyjb @kathyjb

Just diagnosed with PMR. I absolutely do NOT want to start the cycle of endless prednisone. Does anyone have any positive results without the steroid? What I read here sounds like no one can ever fully get off of them. I don’t want osteoporosis or decreased bone density or weight gain. I would so appreciate from anyone who found another way to manage their pain and stiffness. Thank you.

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There are anecdotal positive reports on using Low Dose Naltrexone (LDN) to mitigate PMR pain.

LDN appears have minimal side effects. (I'm not a doctor, so do your research to make sure.)

Here's a link to a 2014 journal paper describing LDN and possible mechanisms behind its pain relief.
https://link.springer.com/article/10.1007/s10067-014-2517-2
There is currently a thread on this Mayo website for PMR where someone has reported positive initial results in relieving PMR pain with LDN.
https://connect.mayoclinic.org/discussion/ldn-and-prednisone/
The following link has more general information, including a link to a video
https://www.lowdosenaltrexone.org/features.html
There are several books on LDN, including "The LDN Book, Vol I" and "The LDN Book, Vol II".

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claude67 | @claude67 | Mar 10, 2023
In reply to @kathyjb "Please tell me more. I was just diagnosed. My Dr says prednisone is the only thing..." + (show)
Profile picture for kathyjb @kathyjb

Please tell me more. I was just diagnosed. My Dr says prednisone is the only thing he prescribes. But I know coming off of it only causes a rebound and taking it does all kinds of awful stuff to the body. I just DO NOT want to take it. Tell me more about the alternative Ned you are taking, please. It’s the Naltrexzone I’m curious about. Does it have bad side effects? Would love to chat with you about this. I am sooooo in pain and unable to do hardly anything and that is NOT me. Thank you for a reply. Kathy

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Kathy, I’m in the process of getting diagoned, so this is early for me. I was very active physically but now trying to figure out how to manage pain. I started at 40 mg of Prednisone, and now down to 5mg. Little inflammation and soreness in right shoulder but better today. I miss exercise but found movement in water helpful. I’m told Tai Chi is helpful and will start that on Monday. I tried light weights but pretty tough on joints. Will keep you posted in my search for quality of life. Claude67

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pkalkstein | @pkalkstein | Mar 10, 2023
In reply to @kathyjb "Please tell me more. I was just diagnosed. My Dr says prednisone is the only thing..." + (show)
Profile picture for kathyjb @kathyjb

Please tell me more. I was just diagnosed. My Dr says prednisone is the only thing he prescribes. But I know coming off of it only causes a rebound and taking it does all kinds of awful stuff to the body. I just DO NOT want to take it. Tell me more about the alternative Ned you are taking, please. It’s the Naltrexzone I’m curious about. Does it have bad side effects? Would love to chat with you about this. I am sooooo in pain and unable to do hardly anything and that is NOT me. Thank you for a reply. Kathy

Jump to this post

I am 4 months into prednisone and one week into LDN. It is too early to tell about the effects. My hope is that LDN will allow me a faster taper off prednisone and then the LDN will maintain me until PMR decides to pack its bags and take off. My prednisone so far has gone from 20mg to 12 1/2 with no problems, but I know most folks slow down drastically after 10mg, and I guess that will be the test for me. I will post whatever results I find. Read about LDN, maybe also CBD (that got rid of my dermatitis). Good luck, Kathy.

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suetex | @suetex | Mar 10, 2023
In reply to @kathyjb "Just diagnosed with PMR. I absolutely do NOT want to start the cycle of endless prednisone...." + (show)
Profile picture for kathyjb @kathyjb

Just diagnosed with PMR. I absolutely do NOT want to start the cycle of endless prednisone. Does anyone have any positive results without the steroid? What I read here sounds like no one can ever fully get off of them. I don’t want osteoporosis or decreased bone density or weight gain. I would so appreciate from anyone who found another way to manage their pain and stiffness. Thank you.

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LDN does seem to lower inflamation and IL6 in particular which seems to be the main transgressor in PMR. I know there are some other cytokines but I think the research is on going on that. MSM is supposed to down regulate IL6 also and from my experience it seems to. One drug I could do without (am seem stuck with) is the estrogen blocker, anastrozole. Some of its side effects are a lot like PMR and can be very confusing.

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Linda Moross | @lmoross | Mar 10, 2023
In reply to @dadcue "There are plenty of alternatives to taking prednisone for PMR. The trick is finding something that..." + (show)
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There are plenty of alternatives to taking prednisone for PMR. The trick is finding something that actually works. I have tried methotrexate and leflunomide along with a variety of NSAIDS. However, you shouldn't really take NSAIDs and prednisone together. Some people get by with just an NSAID which some rheumatologists might say is preferable to prednisone. For me, the NSAIDs didn't help me very much.

From what I read, LDN and hydroxychloroquine works for some people. I don't have any experience with those medications.

You need to be aware that it may not be just PMR you are dealing with. It may be a combination of things or something else entirely. If it is inflammatory arthritis, maybe a TNF inhibitor like Humira might help. Humira wasn't particularly helpful for me.

I would say methotrexate worked but I wasn't able to taper off prednisone. I did get to a much lower dose of prednisone after about a year of methotrexate. By that time my liver enzymes were increasing and I didn't like retching every morning. My rheumatologist wanted me to keep taking methotrexate but I stopped it.

Leflunomide worked. I got off prednisone for a couple of days. Leflunomide stays in your system for months. Infections were a problem the whole time I was taking leflunomide along with prednisone. I got an infection on the day I stopped prednisone. I think my body was deficient of cortisol and didn't like not getting any prednisone that day. Let's just say I had a "pain crisis" and needed 60 mg of prednisone again. My rheumatologist told me to stop leflunomide because of infections caused by "too much immunosuppression." The emergency room doctors wanted me to take prednisone because of a low cortisol level.

The only thing that has worked for me as evidenced by being able to taper off prednisone completely was a biologic called Actemra (tocilizumab). It isn't FDA approved for PMR but it is approved for GCA. If you have RA then Actemra is approved for that too. My rheumatologist need to seek authorization to get Actemra approved for me. I still take Actemra for PMR. I guess that I still have PMR so I'm not cured but I don't have very much pain anymore.

I don't have RA but I have another kind of inflammatory arthritis along with uveitis. My ophtalmologist said Actemra is "not optimal treatment" for uveitis. Now my ophthalmologist says Actemra "seems to be working" for me. Your mileage may vary.

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I am on Actemra also. Wonder drug!!!! After almost five years on prednisone, hydroxychloroquine, methotrexate and Leflunomide which all did not work, I have gone into remission with Actemra. PMR is a challenge. Best wishes for healing.

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Mike | @dadcue | Mar 10, 2023
In reply to @lmoross "I am on Actemra also. Wonder drug!!!! After almost five years on prednisone, hydroxychloroquine, methotrexate and..." + (show)
Profile picture for Linda Moross @lmoross

I am on Actemra also. Wonder drug!!!! After almost five years on prednisone, hydroxychloroquine, methotrexate and Leflunomide which all did not work, I have gone into remission with Actemra. PMR is a challenge. Best wishes for healing.

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Do you still take Actemra for PMR? Have you been able to stay in remission when Actemra was stopped?

I might be in remission but my rheumatologist doesn't plan on stopping Actemra anytime soon. I took prednisone for more than 12 years for PMR and never did achieve remission. Actemra allowed me to taper off prednisone but I had a couple of relapses when Actemra was stopped.

My rheumatologist thinks my immune system has developed a memory for the tissues it has been attacking for many years.

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John, Volunteer Mentor | @johnbishop | Mar 10, 2023
In reply to @kathyjb "Just diagnosed with PMR. I absolutely do NOT want to start the cycle of endless prednisone...." + (show)
Profile picture for kathyjb @kathyjb

Just diagnosed with PMR. I absolutely do NOT want to start the cycle of endless prednisone. Does anyone have any positive results without the steroid? What I read here sounds like no one can ever fully get off of them. I don’t want osteoporosis or decreased bone density or weight gain. I would so appreciate from anyone who found another way to manage their pain and stiffness. Thank you.

Jump to this post

Hello @kathyjb, I would like to add my welcome to Connect along with @sususi, @redboat, @claude67 and others. You will notice that we moved your post to an existing discussion on the same topic so that you can read what other members have shared here:
--- Alternative to Prednisone for Treating PMR?: https://connect.mayoclinic.org/discussion/alternative-to-prednisone/.

I've had two occurrences of PMR, the first lasting 3 and half years, the second lasting 1 and half years, both with a starting dose of 20 mg prednisone. The second time was shorter due to what I believe was changing my lifestyle which included losing some weight, eating healthier - less processed foods, sugar and inflammatory foods and exercising more.

Have you looked into any lifestyle changes which might also help?

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