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.

Welcome @kvd9, I'm sorry to hear you are experiencing a relapse with PMR. I'm currently in remission for the second time and hopefully it will stay that way. I had a tough time with prednisone the first time also. It took me 3 and half years to taper off. The second time, six years later it only took me a year and half to taper off. Both times I started with 20 MG.

@tsc shared a good update article recently in another discussion here - GCA and PMR - Some Study Updates: https://connect.mayoclinic.org/discussion/gca-and-pmr-some-study-updates/

There is also another article you might find helpful - Polymyalgia rheumatica: An updated review - Cleveland Clinic: https://www.ccjm.org/content/87/9/549

Have you tried making any lifestyle or diet related changes to see if that might help?

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Thank you so much @johnbishop for replying! I will study these articles tomorrow as it is late here now. My diet has always been mostly vegan, with an active lifestyle. One of the difficulties with Prednisone for me is that I have osteoporosis as well, so more thinning of the bones is not good for me. So I am afraid to go back on it. Which is why I am looking for an alternative.

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@johnbishop

Welcome @kvd9, I'm sorry to hear you are experiencing a relapse with PMR. I'm currently in remission for the second time and hopefully it will stay that way. I had a tough time with prednisone the first time also. It took me 3 and half years to taper off. The second time, six years later it only took me a year and half to taper off. Both times I started with 20 MG.

@tsc shared a good update article recently in another discussion here - GCA and PMR - Some Study Updates: https://connect.mayoclinic.org/discussion/gca-and-pmr-some-study-updates/

There is also another article you might find helpful - Polymyalgia rheumatica: An updated review - Cleveland Clinic: https://www.ccjm.org/content/87/9/549

Have you tried making any lifestyle or diet related changes to see if that might help?

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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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@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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@mild835, Sorry to hear that prednisone is causing sleep problems for you. I never had that side effect. According the this article, taking prednisone late evening would make it worse.

"Timing of Doses -- Prednisone mimics a hormone called cortisol. This is a hormone that the body releases at times of stress.1
Cortisone levels are highest in the morning and gradually taper down as the day goes on. To reduce some side effects, like insomnia, once-daily doses should be taken in the morning with breakfast. Taking the dose of prednisone too late in the evening may affect your sleep." -- How to Lessen Your Prednisone Side Effects - Verywell Health: https://www.verywellhealth.com/lessening-prednisone-side-effects-1941741

The article goes on to say "Getting plenty of rest is also essential. This can be difficult because prednisone can interfere with sleep. One way to cope is to improve your sleep hygiene. This includes avoiding food and electronics before bedtime and sleeping in a cool, dark room. Some people also benefit from melatonin supplements available over the counter at drugstores."

The Sleep Foundation has some information on teas that may help you sleep better --- Drinking the Right Tea Can Help You Sleep: https://www.sleepfoundation.org/best-tea-for-sleep

Have you discussed your problem with insomnia with your doctor to see if they might have some suggestions?

REPLY
@johnbishop

Welcome @kvd9, I'm sorry to hear you are experiencing a relapse with PMR. I'm currently in remission for the second time and hopefully it will stay that way. I had a tough time with prednisone the first time also. It took me 3 and half years to taper off. The second time, six years later it only took me a year and half to taper off. Both times I started with 20 MG.

@tsc shared a good update article recently in another discussion here - GCA and PMR - Some Study Updates: https://connect.mayoclinic.org/discussion/gca-and-pmr-some-study-updates/

There is also another article you might find helpful - Polymyalgia rheumatica: An updated review - Cleveland Clinic: https://www.ccjm.org/content/87/9/549

Have you tried making any lifestyle or diet related changes to see if that might help?

Jump to this post

Thanks for all the info! It took me awhile to get through since exhaustion makes my mind less sharp!
My husband has been taking Turkey Tail mushrooms since he was diagnosed with prostate cancer (he had to have his removed). Since it is anti inflammatory, he thought I might benefit as well, so I have just started to experiment with that. (After all, you never know until you try!) Have you heard of anyone trying this?
I will bring these articles you quoted to my next doctor appointment, to see what may be best in my case.
And I did do Pilates while I was on Prednisone last time.
Do you have any more dietary, health advice? Thanks in advance for taking the time!

REPLY
@johnbishop

@mild835, Sorry to hear that prednisone is causing sleep problems for you. I never had that side effect. According the this article, taking prednisone late evening would make it worse.

"Timing of Doses -- Prednisone mimics a hormone called cortisol. This is a hormone that the body releases at times of stress.1
Cortisone levels are highest in the morning and gradually taper down as the day goes on. To reduce some side effects, like insomnia, once-daily doses should be taken in the morning with breakfast. Taking the dose of prednisone too late in the evening may affect your sleep." -- How to Lessen Your Prednisone Side Effects - Verywell Health: https://www.verywellhealth.com/lessening-prednisone-side-effects-1941741

The article goes on to say "Getting plenty of rest is also essential. This can be difficult because prednisone can interfere with sleep. One way to cope is to improve your sleep hygiene. This includes avoiding food and electronics before bedtime and sleeping in a cool, dark room. Some people also benefit from melatonin supplements available over the counter at drugstores."

The Sleep Foundation has some information on teas that may help you sleep better --- Drinking the Right Tea Can Help You Sleep: https://www.sleepfoundation.org/best-tea-for-sleep

Have you discussed your problem with insomnia with your doctor to see if they might have some suggestions?

Jump to this post

Thanks for this article John. Very informative. The sleep issues just started this week. I'm trying so hard to stay off of salt and any kind of sugar. Some articles say "no melatonin with Prednisone" others recommend it. I've got a call into my pharmacist to see what she says. I really don't think I will switch to night time doses, but some folks on here suggest it. No, not yet with the doctor (as I don't have a fam doc anymore; he retired). I may send an e-mail off to my Neurologist. I can't get into the Rheumatology Clinic until end of May and that's on an urgent basis. I have to say the freedom from pain far outweighs the side effects, but I need more than 2 hours of sleep and an afternoon nap anymore seems out of the question for my body. I did so much sleeping pre-Prednisone and now I actually have energy. Cortisol levels are probably the issue. I snack on frozen fruit, as you just have to dump it out of a bag. Started this when my hands weren't working. It's a refreshing snack (almost like a real-fruit popsicle).
Go figure this one. I was having trouble since starting Prednisone with my eyes when reading. Extremely irritated just like when you're almost due for a new prescription (which I'm not). Went to Opthamologist the other day. My vision has vastly improved in this short time. That being said, my prescription for reading is too strong now and so I'm using my previous glasses which are slightly weaker. Mostly the right eye. So now I will likely need a prescription change and I just got these glasses in October. The doctor said my vision with my glasses on is better than his. Also dry eye for which I now have drops. Flipside is that cataracts will develop more quickly. Ugh. A good sense of humor goes a long weigh with this, which I now have back. John, thank you again for your quick response. Always very helpful. Keep on keepin' on~ Deb

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@kvd9

Thanks for all the info! It took me awhile to get through since exhaustion makes my mind less sharp!
My husband has been taking Turkey Tail mushrooms since he was diagnosed with prostate cancer (he had to have his removed). Since it is anti inflammatory, he thought I might benefit as well, so I have just started to experiment with that. (After all, you never know until you try!) Have you heard of anyone trying this?
I will bring these articles you quoted to my next doctor appointment, to see what may be best in my case.
And I did do Pilates while I was on Prednisone last time.
Do you have any more dietary, health advice? Thanks in advance for taking the time!

Jump to this post

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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@kvd9

Thanks for all the info! It took me awhile to get through since exhaustion makes my mind less sharp!
My husband has been taking Turkey Tail mushrooms since he was diagnosed with prostate cancer (he had to have his removed). Since it is anti inflammatory, he thought I might benefit as well, so I have just started to experiment with that. (After all, you never know until you try!) Have you heard of anyone trying this?
I will bring these articles you quoted to my next doctor appointment, to see what may be best in my case.
And I did do Pilates while I was on Prednisone last time.
Do you have any more dietary, health advice? Thanks in advance for taking the time!

Jump to this post

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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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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@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

Jump to this post

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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