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.

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dermnurse68 | @dermnurse68 | Jan 29, 2022
In reply to @dermnurse68 "I was taking prednisone for five years and my CRP was high,so along with methotrexate my..." + (show)
Profile picture for dermnurse68 @dermnurse68

I was taking prednisone for five years and my CRP was high,so along with methotrexate my rheumatologist added Rabeprazole 20 mg, this is for RA usually but it has helped me far better than prednisone.
Hope this helps.

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I am sorry, the medication I am taking is leflunomide, gave the wrong medication.

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Teri | @tsc | Jan 30, 2022
In reply to @milld835 "Thanks Teri. I had thought of Valerian as well, so I may just try your tea...." + (show)
Profile picture for milld835 @milld835

Thanks Teri. I had thought of Valerian as well, so I may just try your tea. I will forget about the Melatonin. When I'm down to a lower dose, hopefully I too will stop feeling like a super energizer bunny. Also, when my aunt had terrible osteoporosis, she in her 60's started doing Tai Chi. It was soft and slow and weight bearing and really helped her. She was in so much pain and to watch her do the fluid movements of Tai Chi was very inspirational. She also walked quite alot. Her sister, Ida, became a Yoga master in her 70's and lived to be 103 (just a side note). Two amazing sisters. Thanks again ~ Deb

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Thank you for sharing the stories about your aunts, @mild835. It goes to show we should never give up or view advancing age as a defeat rather than a gift. I hope the tea works - there are a number of the "relaxing" teas on the market.

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microbe1943 | @microbe1943 | Jan 30, 2022
In reply to @chris1466 "My primary care Dr . Prescribed it . It’s is made & used in 50 mg..." + (show)
Profile picture for chris1466 @chris1466

My primary care Dr . Prescribed it .
It’s is made & used in 50 mg tablets as an anti narcotic drug , but they have discovered that 4.5 mg is helping many people with different problems .
At first I was hesitant but I was searching for a way get off prednisone once and for all. I had been nine months prednisone been off for three months and then it would flare up and come back and I did this for five years straight until finally I agreed to try the LDN. I had to start at a 1 mg dose and over 30 days go to 4.5 now I have a pharmacy compounded for me.
In August it will be three years PMR free

I wish you luck. I know how brutal this disease is

It has no side effects.

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I think for those of us w kidney disease LDN is dangerous.

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psmcdonough | @psmcdonough | Feb 4, 2022
In reply to @johnbishop "Welcome @psmcdonough, I have not heard of systemic enzyme therapy used for PMR bud did just..." + (show)
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Welcome @psmcdonough, I have not heard of systemic enzyme therapy used for PMR bud did just now find some information from August 2021 on fighting inflammation topic --- Reducing Bruising, Swelling and Pain with Systemic Proteolytic Multi-Enzyme Therapy: https://nutritionreview.org/2021/08/reducing-bruising-swelling-and-pain-with-systemic-proteolytic-multi-enzyme-therapy/

Are you looking for an alternative to prednisone to treat PMR?

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Yes I am looking for an alternative to prednisone. I have not heard of ONE before. How dare is that?

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pokey | @pokey | Feb 5, 2022
In reply to @chris1466 "My primary care Dr . Prescribed it . It’s is made & used in 50 mg..." + (show)
Profile picture for chris1466 @chris1466

My primary care Dr . Prescribed it .
It’s is made & used in 50 mg tablets as an anti narcotic drug , but they have discovered that 4.5 mg is helping many people with different problems .
At first I was hesitant but I was searching for a way get off prednisone once and for all. I had been nine months prednisone been off for three months and then it would flare up and come back and I did this for five years straight until finally I agreed to try the LDN. I had to start at a 1 mg dose and over 30 days go to 4.5 now I have a pharmacy compounded for me.
In August it will be three years PMR free

I wish you luck. I know how brutal this disease is

It has no side effects.

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I am SO tired of the side effects of prednisone. The main culprits are blurring vision, lack of sleep, emotional lability, and weight gain/puffiness. Yuck! It beats the pain and immobility of PMR and I'll settle for it if I have to, but I wish there were an alternative that would work instead. I have passed an article on LDN to my general practitioner (who first diagnosed PMR) and she is going to check it out -- hopefully, she will find it acceptable as a safe and potentially effective replacement. I am concerned about how long it will take to taper prednisone before beginning the LDN, but it will be whatever it will be.

I never realized how a chronic illness can change a person until this PMR business struck. It is demoralizing to lose function and mobility -- never mind the pain. But even now that prednisone has given me back function and mobility and eliminated the pain, I still feel like a stranger to myself in many ways. The 'cure' isn't worse than the disease, but it is a VERY mixed bag. I know I'm not "entitled" to perfect health, but I so miss the healthy days of feeling up-to-whatever-came-along. I try to concentrate on being grateful for all I have had and still do have, but this is a harder path than I would have chosen, if I'd been able to choose.

Does anyone have experience with LDN that they could share in detail? Just looking to feel hopeful again.

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abbeyc | @abbeyc | Feb 5, 2022
In reply to @kvd9 "I am experiencing a relapse of PMR, I wonder if anybody found an alternative to Prednisone..." + (show)
Profile picture for kvd9 @kvd9

I am experiencing a relapse of PMR, I wonder if anybody found an alternative to Prednisone since I had a difficult time with it the first time around, which I took for about a year until Feb 21. Now having a relapse which I am afraid came on after my Covid vaccine shot. I would appreciate any help. Thank you

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I just started trying Methyprednisolone (day 2) to see if works better than Prednisone for me. Still a steroid though. My Rheumatologist is going to talk to me about adding Methotrexate - I don't know alot about that yet.

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jfannarbor | @jfannarbor | Feb 7, 2022
In reply to @milld835 "I'm in the 4th week of 20 mg of Prednisone and the insomnia thing has kicked..." + (show)
Profile picture for milld835 @milld835

I'm in the 4th week of 20 mg of Prednisone and the insomnia thing has kicked in. So 2 hours sleep last night. Wide awake. Tried some milk, raisins, but no go. Do you think it would work to start taking the Prednisone late evening?

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I think the half life of prednisone is 24 to 36 hours. Not sure it would make any difference. But you have nothing to loose

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marda | @marda | Feb 7, 2022
In reply to @johnbishop "Hello @marda, Welcome to Connect. I know it can be really difficult sometimes to taper off..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

Hello @marda, Welcome to Connect. I know it can be really difficult sometimes to taper off of prednisone. I've never been on a high dosage of 60 mg as you have but I did have trouble tapering off of prednisone when getting to a lower dose. When you tapered down to 10 mg and then tried to get to 5 mg, were you tapering from 10 down to 5 mg?

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I tapered from 10 mg to 7 1/2mg to 6mg and then to 5 mg, but this last 5 is killing me. I see the Rheumatologist next week and I want to increase it, but I'm going to try and work through the pain until then. I was good with the 7 1/2 and and stayed on 7 1/2 before I went to 6 1/2 and stayed on 6 1/2 for 3 weeks. A trip to my PCP in early January for my yearly told me to go to 5 mg. because my SED was 28 and CRP was 3.4. My Primary is working with my Rheumatologist and I feel well taken care of with very caring doctors. Some days I can't even take the dogs for a short walk the PMR is so painful and just standing to make dinner is difficult.

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kmeikle1 | @kmeikle1 | Feb 8, 2022
In reply to @kvd9 "I am experiencing a relapse of PMR, I wonder if anybody found an alternative to Prednisone..." + (show)
Profile picture for kvd9 @kvd9

I am experiencing a relapse of PMR, I wonder if anybody found an alternative to Prednisone since I had a difficult time with it the first time around, which I took for about a year until Feb 21. Now having a relapse which I am afraid came on after my Covid vaccine shot. I would appreciate any help. Thank you

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If you're trying to work through PMR pain, the inflammation will just continue to build up and you may have a flare. When you have a flare, general advice is to increase by 5 mg. until pain is controlled and then go back to the last place you felt good. If you were good at 6.5 that would be the place. Your body dictates tapering, not your blood work or a set schedule. We all want to reduce as much as we can, but if you go too low or too fast, you'll have a setback. You shouldn't be in pain.

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ste44 | @ste44 | Feb 8, 2022
In reply to @kvd9 "I am experiencing a relapse of PMR, I wonder if anybody found an alternative to Prednisone..." + (show)
Profile picture for kvd9 @kvd9

I am experiencing a relapse of PMR, I wonder if anybody found an alternative to Prednisone since I had a difficult time with it the first time around, which I took for about a year until Feb 21. Now having a relapse which I am afraid came on after my Covid vaccine shot. I would appreciate any help. Thank you

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Has anyone had a PMR flareup and still had low Sed rate

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