What are your rheumatologists using to stop the pain from PMR.?

Posted by lindaadel @lindaadel, Oct 6, 2023

What type of treatments are your rheumatologists using for your PMR? I was diagnosed April 2023. I have been on prednisone since that day starting at 10 mg every three weeks I keep reducing it by 1 mg until I will be finished middle of November. I was told by my doctor that she does not believe in giving prednisone for more than two rounds. If I still have a lot of pain she will start me on methotrexate. She did mention over-the-counter anti-inflammatories like ibuprofen which I really didn’t sound interested in. have any of you had any luck with the over-the-counter anti-inflammatories? She did mention that she does not believe in medication unless your pain is intolerable. do any of you have the same situation with your rheumatologist?

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I’ve had PMR for a year. I’ve been on prednisone since diagnosis. Tried methotrexate for 6 mos & couldn’t notice any difference. And the side effects were not fun to deal w either. My rheumatologist said that inflammation is bad for your body too & prednisone reduces the inflammation (& pain). Is taking prednisone the lesser of the 2 evils? It’s hard to make that determination but I’d like to not be in pain & be able to function better. So, alas, I continue taking the prednisone.

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@robin1040

I’ve had PMR for a year. I’ve been on prednisone since diagnosis. Tried methotrexate for 6 mos & couldn’t notice any difference. And the side effects were not fun to deal w either. My rheumatologist said that inflammation is bad for your body too & prednisone reduces the inflammation (& pain). Is taking prednisone the lesser of the 2 evils? It’s hard to make that determination but I’d like to not be in pain & be able to function better. So, alas, I continue taking the prednisone.

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With these sort of meds, it's good to keep an eye on your liver. Check your ADT/ALT enzymes when do bloodwork.

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@robin1040

I’ve had PMR for a year. I’ve been on prednisone since diagnosis. Tried methotrexate for 6 mos & couldn’t notice any difference. And the side effects were not fun to deal w either. My rheumatologist said that inflammation is bad for your body too & prednisone reduces the inflammation (& pain). Is taking prednisone the lesser of the 2 evils? It’s hard to make that determination but I’d like to not be in pain & be able to function better. So, alas, I continue taking the prednisone.

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Robin thank you so very much for your response! My rheumatologist is not very open minded! Right now I will take one day at a time and see what happens with my pain. Thank you again Robin!

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I have a similar situation. My US rheumatologist of which I’ve seen three so far have been unable to help me very much.
I found a doctor in Costa Rica, who suggested prednisone injections. I know that will work for me because I had a major attack five years ago and was given intravenously prednisone with immediate results that lasted almost a year. But I think you will have a hard time finding a rheumatologist who will do anything beyond 20 mg in the usa.

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Thank you so very much for responding! It seems like every rheumatologist has their own way of thinking and I’m sure they all think their way is the right way! Also every person has their own way of reacting to different medication‘s each of us is unique! Wishing you all the best and thank you so much for responding!!!

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lindaadel; I am being treated by my primary care Internal Med doc. I was diagnosed in January 23 and put on prednisone like everybody else. I came off prednisone entirely in August for 5 weeks. Had a brutal 5 day flare and am back on prednisone 20 mg for 10 days and will taper down for 14 weeks and move to Kevzara. He said if he refers me to a specialist it will be a hematologist and not a rheumatologist because he feels that the ones in this area are too conservative and not willing to try new things. I am excited about going to Kevzara now that the FDA has approved it for PMR.
Good luck and keep posting

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She should know that NSAIDS like ibuprofen don’t help with PMR pain. I’m on 15 mg prednisone for 2nd month and can barely move when I wake up. I’m surprised your doctor has such a cavalier attitude about your pain. Personally, I’m looking for a new doctor for this reason.

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I am shocked at your rheumy's attitude towards prednisone, especially as it is commonly accepted as the only standard effective treatment for PMR. Yes, some people can have a boatload of side effects from taking prednisone but the main thing that matters is keeping the inflammation (i.e pain) under control. Usually 20 mg is the starting dose for prednisone but occasionally I've heard of 15 mg being effective to start but that's on the lower end. Throughout treatment for PMR what matters is taking the lowest EFFECTIVE dose that keeps the pain and inflammation under control. It isn't a race to get off prednisone! Some people are fortunate and are able to control PMR and be over it in under two years but I think those are only somewhere around 30%. Unfortunately, doctors who are focused on getting their patient off prednisone quickly aren't focused on what matters, which is controlling the pain and inflammation. Uncontrolled inflammation from PMR risks many things, the worst being blindness. I had 3 different rheumys before I found one who "got it" and wasn't hell bent to get me off prednisone too quickly. I would be surprised if you've ever been without pain since your dosage of prednisone has never been above 10 mg.
After almost 7 years I am now down to a dose of 1 mg and don't much care when I get down to zero. What has mattered is that I've kept the PMR controlled except for flares in the first couple years that kicked my doses way up again. Oh, by the way, I have continued my full time construction job all these years. The only way that happened was because I took enough prednisone to keep the pain under control. I hope you're looking for a new rheumy!

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I have two, yes 2, rheumys. One is kind of OK and a long drive away. The other is great as she explains everything to me and answers all my questions on a Zoom chat. The first one wrote out a script to get 6 different X-rays. I am not into unnecessary radiation so I didn't get them, more to the point he never told me what they were for. He was shocked that I already knew what I had before my visit, he said he had never had that happen before - he must be unaware of how much info there is online. He increased my prednisone to 20 mg from 15 (what my PA had suggested) as I was in tremendous pain on 15. He wants to see me in 6 weeks from the first visit. The other one told me that everyone's BODY is different, and that only about 10% of PMR patients have it more than 2 years. She did not want me to be on 20 mg for more than 2 weeks and it had already been 2 weeks so we would talk about a decrease in 2 more weeks (tomorrow). So I might get some conflicting info from having 2 rheumys, and then later this month I am going to the Mayo Clinic to get help from a third.

My life is pretty normal now, I get up at 6ish and have a good amount of pain, though every day is different. I take my pills with 2 cups of kefir (trying to get enough calcium) and in about 3 hours I am playing pickle ball, or throwing pots in my studio. I wonder why every day is different and if it's not a bad morning could I skip the prednisone? I will ask that tomorrow.

What Raven1955 wrote above is very helpful, but I worry about the side-effects of the prednisone. I did think it was all about getting off of it, not that I would be able to function without the drugs, but I did think it was all about tapering. Hmmmm lot's to think about.

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I take a combination of tramadol and acetaminophen and it seems to work well. I Take 100 mg tramadol and 1000 acetaminophen. There is some concern about tramadol since it is potentially addictive that I've been taking it for 20 years without any real issues. You just have to be careful not to take it every day, and if you do you'll need to taper down on that just like you would with prednisone. Be sure to check with your doctor. I also drink a lot of coffee intake caffeine pills from time to time and surprisingly that seems to help as well I don't know why.
Good luck!

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