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. šŸ™‚ )
--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.

DadCue | @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)
@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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1 reply
Mentor
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)
@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 donā€™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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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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1 reply
sususi | @sususi | Mar 10, 2023

Thanks for your welcome John, interesting to hear your PMR experience was improved by lifestyle changes. I was already slim on a fresh veg and fish diet when my PMR started, my lifestyle was good, all my problems started after the one covid vaccine I had, never again..

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kathyjb | @kathyjb | Mar 11, 2023
In reply to @sususi "Hi kathyjb, I have PMR and Iā€™m not on prednisone, same as you I donā€™t want..." + (show)
@sususi

Hi kathyjb, I have PMR and Iā€™m not on prednisone, same as you I donā€™t want the side effects, my opinion they are serious. I want to try LDN but my GP canā€™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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I got my GP to order the LDN today from a local compound pharmacy. Iā€™ll get it next week some time. Iā€™ll let you know how it works, if you would like. Stay in touch.

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1 reply
kathyjb | @kathyjb | Mar 11, 2023
In reply to @johnbishop "Hello @kathyjb, I would like to add my welcome to Connect along with @sususi, @redboat, @claude67..." + (show)
@johnbishop

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?

Jump to this post

Was just diagnosed Sonja ent tried much yet. I did give into some simple ibuprofen gel caps today and had less pain. Best day Iā€™ve had in many weeks. I also doubled the Lorazapam I have taken only at night for sleep for years. I always take 1mg, but last night with it at 2mg along with 400mg Ibuprofenā€¦I slept much better and was not awakened by pain.

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1 reply
kathyjb | @kathyjb | Mar 11, 2023
In reply to @pkalkstein "I am 4 months into prednisone and one week into LDN. It is too early to..." + (show)
@pkalkstein

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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A local compounding pharmacy got the order for LDN today. Iā€™ll pick it up next week and begin. Going to not do the Prednisone. I took 400mg of gelcap Ibuprofen last night along with 2mg of Ativan and had much less pain. I hadnā€™t taken any NSID because they usually bother my stomach. But the gelcaps didnā€™t. I wasnā€™t perfect, but I slept much much better and had less pain in the night and today. I took another dose of the Ibuprofen today also.
Kathy

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1 reply
Linda Moross | @lmoross | Mar 11, 2023
In reply to @dadcue "Do you still take Actemra for PMR? Have you been able to stay in remission when..." + (show)
@dadcue

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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I am still on Actemra and have not tried to go off. I would be afraid to do so. My rheumatologist has not said how long she intends to keep me on it.

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sususi | @sususi | Mar 11, 2023
In reply to @kathyjb "I got my GP to order the LDN today from a local compound pharmacy. Iā€™ll get..." + (show)
@kathyjb

I got my GP to order the LDN today from a local compound pharmacy. Iā€™ll get it next week some time. Iā€™ll let you know how it works, if you would like. Stay in touch.

Jump to this post

Thanks kathyjb, yes please, I bet there will be a lot of us interested in how it works for you, hopefully it will 🤞🏼

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1 reply
kathyjb | @kathyjb | Mar 11, 2023
In reply to @kathyjb "Was just diagnosed Sonja ent tried much yet. I did give into some simple ibuprofen gel..." + (show)
@kathyjb

Was just diagnosed Sonja ent tried much yet. I did give into some simple ibuprofen gel caps today and had less pain. Best day Iā€™ve had in many weeks. I also doubled the Lorazapam I have taken only at night for sleep for years. I always take 1mg, but last night with it at 2mg along with 400mg Ibuprofenā€¦I slept much better and was not awakened by pain.

Jump to this post

There are typos in that response of mine. Was supposed to say ā€œjust diagnosed so havenā€™t tried much yet.ā€ Oops!

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kathyjb | @kathyjb | Mar 11, 2023
In reply to @sususi "Thanks kathyjb, yes please, I bet there will be a lot of us interested in how..." + (show)
@sususi

Thanks kathyjb, yes please, I bet there will be a lot of us interested in how it works for you, hopefully it will 🤞🏼

Jump to this post

Iā€™ll definitely report. Iā€™m still amazed today at how much better I felt just taking 400mg of Ibuprofen gelcaps and 2mg of Lorazapam (generic for Ativan) at bedtime last night. I slept better and with less pain than I have in months. I also took another 400 of gelcap Ibuprofen mid-day. Regular Ibuprofen did nothing before except hurt my stomach. These did something good and caused no stomach upset.

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