Has anyone fought Polymyalgia without prednisone successfully?

Posted by ddonnagirl1 @ddonnagirl1, Apr 16 9:00am

I have been on Prednisone for almost two years. I started at 60mg and just now dropped to 2.5. My body is so sore at this point but not like the initial diagnosis. My blood markers have always been normal. My Rheumatologist insists that my Polymyalgia is in remission. She wants me off Prednisone ASAP. My question is has anyone else experienced joint pain and muscle aches and just rode it out. Does the pain finally go away. Is it the adrenal glands struggling to come back. Has anyone fought Polymyalgia without prednisone successfully? Thanks 😊

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

@gailg

I developed what I am sure is PMR about 4 years ago. Saw multiple doctors but my blood work was always in the normal range so I was told I didn't have it and sent to a different doctor. Finally, I gave up and took massive doses of ibuprofen to just survive. Gradually got about 80%+ better and I can do everything I want with just minimal pain. Still usually take 3-4 Ibuprofen a day but I decided that was better than prednisone. I have yearly blood work and so far the ibuprofen seems to not be causing me problems. I know this isn't for everyone but it has worked for me when all doctors gave up on me.

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Thank you so much for sharing your experience. So many people say NSAIDs don't help, but it does seem they are helpful when the pain isn't so great, and when blood work is normal. I feel like there's no 'safe' drug, so both prednisone and NSAIDs need to be monitored, and both can have side effects. Please know I was glad to hear you found something that worked for you. I also hope you might find better doctors down the road, that take your pain seriously. Best wishes!

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@ddonnagirl1

Thank you so much for your reply. I’m down to 2.5 mg of prednisone and desperate to get off of it. I feel as if I am having a relapse but do not want to up my dose so am trying to live through it with Ibuprofen as well. How long did it take for you cross over to that 80% mark? I’m glad you’ve had no ill affects from the ibuprofen.

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Not sure how long it took exactly. I know I wanted to die for the first year. Then it slowly just got noticeably better and I started tapering the ibuprofen. Terrible illness. Good luck to you.

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@gailg

I developed what I am sure is PMR about 4 years ago. Saw multiple doctors but my blood work was always in the normal range so I was told I didn't have it and sent to a different doctor. Finally, I gave up and took massive doses of ibuprofen to just survive. Gradually got about 80%+ better and I can do everything I want with just minimal pain. Still usually take 3-4 Ibuprofen a day but I decided that was better than prednisone. I have yearly blood work and so far the ibuprofen seems to not be causing me problems. I know this isn't for everyone but it has worked for me when all doctors gave up on me.

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Hi Gail.
Would you be willing to share a little about your PMR? How did it feel to you? Bi-lateral, I take it, for starters. Any info about how it felt to you and where it was located would be very much appreciated.
Also, have you had any reflux or other issues from the Ibuprofen? Even sporadically?
Do you take your Ibuprofen with food, just water, milk? And at any time of day or night?
Lastly, how often are you checked and do you know what labs are measured?
Thanks so very much! I have not been formally diagnosed yet, but pretty darned sure I have PMR. I am also trying the Ibuprofen route, but so far only taking 1 200 mg per day at bedtime. Been about 30 days now. I take it with a piece of bread and cup of Lactaid. I did eat a larger than normal dinner last night, 1 cookie and a little Skinny Pop after 9:30, then took the Advil.
Again, best to you and many thanks. I keep getting interrupted! Hope this makes sense.

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I started with groin and hip pain which came on very suddenly. Progressed quickly to shoulder, arm, and hand pain which was very debilitating. Always bilateral. I saw several NS and a pain doctor. Also several general physicians. One finally said it sounded like PMR and sent me, several times, for the blood work which was always normal. So, he diagnosed arthritis and said live with it. Never did see a rheumatologist because no one suggested it. When I found this web site it all fit together but by then I was so far into it I didn't want to see a NS or start prednisone, especially since I had chemo 25 years ago which messed with my bones. When it was really bad I was taking 600 mg 3 times a day. Morning and evening with dinner and in the middle of the night with some crackers/antacids. I do like the ibuprofen because it is an anti inflamatory (sp). I get a complete blood work up once a year now and so far things are good that way. I'm sure this is not the way to go for everyone but at this point I stay as far away from doctors as possible. I really feel I was let down. Good luck to you.

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@glinda47

Hi Gail.
Would you be willing to share a little about your PMR? How did it feel to you? Bi-lateral, I take it, for starters. Any info about how it felt to you and where it was located would be very much appreciated.
Also, have you had any reflux or other issues from the Ibuprofen? Even sporadically?
Do you take your Ibuprofen with food, just water, milk? And at any time of day or night?
Lastly, how often are you checked and do you know what labs are measured?
Thanks so very much! I have not been formally diagnosed yet, but pretty darned sure I have PMR. I am also trying the Ibuprofen route, but so far only taking 1 200 mg per day at bedtime. Been about 30 days now. I take it with a piece of bread and cup of Lactaid. I did eat a larger than normal dinner last night, 1 cookie and a little Skinny Pop after 9:30, then took the Advil.
Again, best to you and many thanks. I keep getting interrupted! Hope this makes sense.

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Forgot to say, I am 77 but very active including riding my horses.

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@gailg

Forgot to say, I am 77 but very active including riding my horses.

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Wow! That Ibuprofen must really be helping if you can still ride! Maybe it's not PMR! Have you tried weaning off the Ibuprofen and seeing how you feel? You may not need it or as much anyway. No heart issues I take it.
Fully understand that you don't want to go thru prednisone after having had chemo. It can mess with a lot, bones for certain. I already have osteoporosis so the thought of this drug eating my bones along with all the other side effects, most of which I already have (extreme anxiety, insomnia, borderline BP, tachy, well, every symptom. Next week I will have an ultrasound by the rheum I see (who is leaving medicine next month. She's a good doc, figured she'd go) and "determine" if this is PMR. After labs, of course, which I have to beg for. I feel like, unless you're "connected," you are apt to less than adequate care. It's incredibly mind-boggling to me. I am 100% convinced that age has something to do with it. Once you hit a certain point, it's so pathetically obvious. Thanks for sharing and may you continue, hopefully pain-free to enjoy a wonderful and healthy life doing the things you love.

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Just interjecting a caution comment about ibuprofen. My husband was taking it for back pain, started having stomach issues, had an endocopy. He had developed a very large ulcer and we were lucky to get it under control before it progressed to something worse.

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I could not take Predisone. Dr put me on Actemra Infusion.
Is anyone else on that.
It is helping. I go once a month. Theresa

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@trina24

I could not take Predisone. Dr put me on Actemra Infusion.
Is anyone else on that.
It is helping. I go once a month. Theresa

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Side effects from Actemra? And from Pred?
So glad it's working for you.

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@pmrsuzie

Just interjecting a caution comment about ibuprofen. My husband was taking it for back pain, started having stomach issues, had an endocopy. He had developed a very large ulcer and we were lucky to get it under control before it progressed to something worse.

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How much ibu was he taking per day and for how long?
Also wonder about his ibu use before the back issues.
What kind of stomach issues was he having?
Very happy to hear it was caught and treated. How did the doc treat his ulcer? Hope your husband has found something else to control his back pain that is not as tough on him!

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