Alternative to Prednisone for Treating PMR?

Posted by kvd9 @kvd9, Jan 26, 2022

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

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

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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LDN ( low dose naltrexone) I have 4.5 mg compounded for me & I take 1 a day
I am in remission almost 3 years after 5 years of PMR & prednisone.
Do some homework on this .
It’s a game changer for some of us .

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Good thread. I haven’t posted in 6 mo or so. Still slaying the dragon called PMR, down to 4.5 mg. I’m
Tapering at .5 mg / month or 5 weeks and even then I’m doing a modification which entails taking 4 at 9 am then the .5 no later than 1 pm. I do this for a week before dropping to the next level. I’m due to drop to 4 any day now but taking it slower as I’m having some muscular issues. As far as sleep help I use an herbal tea with Passion flower ( no valerian) about 2 hours before bed, try to cut off any screen time, and I do have Passion flower tincture from my local herbalist. I go to sleep by DO NOT stay asleep thru the night. I accept this reality and just try to do deep breathing and rest. I’m just about two years into this journey. I too want off the steroid but know too swift a curtailment can be risky. I got GCA on my first bold tapering.. take care all.

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@chris1466

LDN ( low dose naltrexone) I have 4.5 mg compounded for me & I take 1 a day
I am in remission almost 3 years after 5 years of PMR & prednisone.
Do some homework on this .
It’s a game changer for some of us .

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Very interesting Chris. Did your rheumatologist prescribe? What side effects of the naldrexone? I’m going to read up on it. Is it an anti depressant or narcotic?

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@tsc

Hi @kvd9 when prednisone was disrupting my sleep, I found a tea of lemon balm and valerian helpful. I would get up and read a book, drink the tea, get drowsy, go to bed and be able to get a couple hours more of sleep. I stopped feeling like a super energetic zombie.
Don't take melatonin as PMR is an autoimmune disorder and melatonin is to be avoided. Now that I'm down to 4 mg my normal sleeping pattern, I sleep as I always did, before 40 mg for Giant Cell Arteritis.
I did Pilates for 25 years, and when diagnosed with osteoporosis was shocked to learn that many of the Pilates exercises - involving forward flexion of the spine, that wonderful C curve, can cause vertetebral fractures. The same is true of Yoga. I found exercisews appropriate for osteoporosis - Carol Michaels and Sara Meeks.
Best wishes, Teri

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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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In reply to @psmcdonough "Systemic" + (show)
@psmcdonough

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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@karinaph

Very interesting Chris. Did your rheumatologist prescribe? What side effects of the naldrexone? I’m going to read up on it. Is it an anti depressant or narcotic?

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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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@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.

Jump to this post

Low dose naltrexone (LDN)

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@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.

Jump to this post

Thank you Chris. I did a search on this drug and saw the low dosing data and micro-dosing too. The NIH paper 2018 is quite technical. Thankfully my spouse is a biochemist/ clinical pharmacist/ basic researcher. He gave a light read and will follow up. Sounds very promising. Did you stop the P and start the N at the same time or cut one and add the other? I’m two years in and I think I’m having a flare right now, the last week has been brutal. It’s my second attempt at tapering, honestly I couldn’t go much slower this time. Thanks for your information, really useful and glad you found a solution.

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@karinaph

Thank you Chris. I did a search on this drug and saw the low dosing data and micro-dosing too. The NIH paper 2018 is quite technical. Thankfully my spouse is a biochemist/ clinical pharmacist/ basic researcher. He gave a light read and will follow up. Sounds very promising. Did you stop the P and start the N at the same time or cut one and add the other? I’m two years in and I think I’m having a flare right now, the last week has been brutal. It’s my second attempt at tapering, honestly I couldn’t go much slower this time. Thanks for your information, really useful and glad you found a solution.

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I hope you find the perfect timing to switch and get her off prednisone onto LDN..

I waited a couple of months after prednisone before starting LDN as I felt a flare coming on… I started on a very minute tiny dose and compounded it myself with my doctors permission until I reached 4.5 and got tired of compounding it and found pharmacy to send it to me every six months..

I’m glad you have your husband support and hopefully this might be an answer for you let me know how it works out…

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