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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kvd9 | @kvd9 | Jan 27, 2022
In reply to @johnbishop "To be honest I had never heard of anyone using Turkey Tail mushrooms and had to..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

To be honest I had never heard of anyone using Turkey Tail mushrooms and had to look it up. It does look like it does have some benefits but does list the following at the end of the article - "Even though it has a good safety profile, it’s important to speak with your doctor before supplementing with turkey tail mushroom."

5 Immune-Boosting Benefits of Turkey Tail Mushroom: https://www.healthline.com/nutrition/turkey-tail-mushroom

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Turkey Tail was recommended to my husband by a specialist and it has his markers going down!
If I have any success with my experiment I will let you know.
Be well! K

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John, Volunteer Mentor | @johnbishop | Jan 27, 2022
In reply to @marda "I've been on Prednisone for 2 1/2 years and have tried to wean off several times...." + (show)
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I've been on Prednisone for 2 1/2 years and have tried to wean off several times. I started with 60 mg. a day and have weaned down to 10 successfully, but when I get to 5 my PMR comes back. I've had to have a shoulder replacement because I developed Avascular Necrosis from taking so much Prednisone so it is important that I get off of it, but these last 5 have been very painful and I'm looking for something else to control the pain in my neck, back and shoulders. The last two weeks I have itching and scaly scalp and ears which I have had in the past but the Prednisone helped to diminish it. I'm going to make an appointment today with my Rheumatologist today and see if he has any other suggestions, but it will probably be 2 weeks to get in to see him. Any advise to help with the pain.

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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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marda | @marda | Jan 27, 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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No I went to 7 1/2 for three weeks than 6 1/2 for three more and I've been on 5 for two weeks.

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John, Volunteer Mentor | @johnbishop | Jan 27, 2022
In reply to @marda "No I went to 7 1/2 for three weeks than 6 1/2 for three more and..." + (show)
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No I went to 7 1/2 for three weeks than 6 1/2 for three more and I've been on 5 for two weeks.

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You might ask your doctor or rheumatologist to prescribe some 1 mg prednisone tablets to help taper down with less amounts. My first occurrence with PMR I spent the last six months going back and forth between 1 mg and 1/2 mg until I was finally able to stop taking prednisone and not have the bad pain.

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Teri | @tsc | Jan 27, 2022
In reply to @kvd9 "Thank you very much Teri @tsc. Unfortunately I have an allergic reaction to Valerian, it gives..." + (show)
Profile picture for kvd9 @kvd9

Thank you very much Teri @tsc. Unfortunately I have an allergic reaction to Valerian, it gives me heart palpitations!
I had private zoom lessons for Pilates, thanks to lockdown, with an instructor who was very careful because of the osteoporosis . And the strengthening is necessary as much as possible! Mostly do walking now. But sometimes I feel like I need a magic wand!
But I didn't know that about melatonin, so thanks for that info.
Wishing you health and well being, K

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Hi, I'm glad to hear about your Pilates instructor. I never attended a class in which any instructor mentioned osteoporosis. Lemon Balm is gentle and is quite soothing on its own - so it need not6 be coupled with valerian. Take care, Teri

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psmcdonough | @psmcdonough | Jan 28, 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 split my dose. One in the morning one in the evening about 12 hours apart. Ask your doctor.

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psmcdonough | @psmcdonough | Jan 28, 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 am wondering if anyone has any success with system in multi-enzyme treatment ? Suppose to be an old treatment used in Germany for pain.

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1 reply
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psmcdonough | @psmcdonough | Jan 28, 2022
In reply to @psmcdonough "I am wondering if anyone has any success with system in multi-enzyme treatment ? Suppose to..." + (show)
Profile picture for psmcdonough @psmcdonough

I am wondering if anyone has any success with system in multi-enzyme treatment ? Suppose to be an old treatment used in Germany for pain.

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Systemic

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milld835 | @milld835 | Jan 28, 2022
In reply to @psmcdonough "I split my dose. One in the morning one in the evening about 12 hours apart...." + (show)
Profile picture for psmcdonough @psmcdonough

I split my dose. One in the morning one in the evening about 12 hours apart. Ask your doctor.

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Thank you. I will when he calls. What is your dose?

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abbeyc | @abbeyc | Jan 28, 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 know many here will disagree but because the pain at night into morning was so unbearable I decided to take my prednisone’s at dinner time thinking it would help more then. I also read once that there is a time released medication (I need to find the name of it again) that kicks in around 2am when inflammation is the worst. Anyway I have no problem falling sleep. I might have a little more energy around 9pm to do some stretching and other exercises. I read or watch tv and then find myself falling sleep against my will on the couch around midnight so I go to bed and fall asleep immediately. I think the time between dinner and a late bedtime appears to be ample for me. I get up around 7-8 am each morning so I get between 6-8 hours sleep depending on when I go to bed.

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