Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Thanks for the info and good luck. Keep us posted on changes in PMR.

I just started on methotrexate yesterday. 10 mgs. morning and afternoon and am trying to wean down from 10 mgs. of prednisone at the same time. I have a lot of pain but am also completely exhausted. Does the mx have this effect for more than 1 day? Does it really take 6 to 8 weeks to take effect?

I am a very active 78 year old woman and new to this forum, but not new to Polymyalgia. I was diagnosed in January 2022. I confirmed my diagnosis with my rheumatologist and a specialist in NYC but my bIood tests never indicated any problem. I began taking 15 mg of prednisone at that time and had instant incredible relief. I have a very bad back and was able to stop the epidurals I was receiving.

I was slowly decreasing the dosage every 3 weeks until March 2022 when I fell and shattered my elbow requiring major surgery and a fast reduction to 5 ml of prednisone which I have remained on since then. Both my rheumatologist and my son, a pulmonologist, are very wary of staying on prednisone and convinced me remaining at 5 ml is the best option.

I have had flare ups but managed to push through them but recently it is back with a vengeance. I am going to PT and trying massage but they almost seem to make my pain worse. It is affecting everything I do. Having no conclusive blood tests and uncertain about the best treatment to follow, I feel totally at a loss.

One of the worst aspects of PMR, for me, is that the treatment (prednisone) works but there is all this pressure to get off it quickly. I have had the disease for 20 months with 4 major flare-ups. Each time, I decreased the dose at MD's instruction even though I had a lot of symptoms. Every time I got worse and my efforts to tough it out were not effective. My rheumatologist told me I could increase the dose 25% when I had a flare, which I did, and then decreased again. You might discuss doing that with your doctor.
After all my failures my MD wants me to add methotrexate to the prednisone, which might allow me to taper to a lower dose (presently on 8 mg). From my experience and reading, that seems to be a common strategy for people who can't get low enough. Might be another thing to discuss.
If that fails, the next step (from my reading), seems to be newer "targeted" drugs like Actemra and Zevzara. My perception is that patients need to fail on other drugs before being put on one of these.
I also pay attention to the side effects I'm having and read my bloodwork to see how bad an effect the prednisone is having. All of the things which might be affected like blood sugar, blood pressure, heart rhythm, and glaucoma test, have all either not been affected or only slightly. Prednisone can have very negative effects but they are different for each person. Knowing the facts from my tests and self observation makes me more relaxed in the face of all the pressure to get off prednisone. You might make sure your doctor is monitoring for prednisone side effects.

Thank you Linda for your response. My doctor does monitor me monthly and I have not had any negative tests so far. I am confused about when you increase your dosage, do you go back to square 1, i.e. 15 mg or do it gradually the way you decrease. I just moved up my rheumatologist appt. Hope to get better direction. Again, thank you.

A 25% increase from 5 would be 6.25. Then you go back down gradually. Several times I had to go from 8mg to 10 mg. I stayed several weeks on the 10, then several weeks on 9, etc. I've been doing this awhile so I go by feel, not dropping until I'm doing better. I just recently went from 6.5 to 8. I was in bad shape at the 6.5 so 8 wasn't enough. I asked my MD if I could go to 9 for a week, which I did, then back to 8. It sounds like you need good instructions from your doctor.

Thank you again.

You might want to go back to 15 mg ( where as you say you found relief) and stay for about a month and then go to 7 mg. and start to taper again. Slow and steady should be your motto.

Thank you for your suggestion. I have a rheumatologist appointment next week and will discuss with him.

So sorry to miss this--it went to spam.
I am taking prednisone, started 12/5/22 at 20mg, now at 7.5mg. Started LDN a month ago and quickly went to 4.5.
I am told you can get a prescription and the LDN at https://agelessrx.com/.
Good luck!