Length of PMR condition

have had injections for four years, no problems except the pain at the time of the injection, significant relief for 2 to 3 months afterwards. Methotrexate did a number on my stomach lining so opted for the injections and using diclofenac gel.

the rheumy I saw after a wait of fourteen months was also dismissive and same "your PMR can last only about two years at most so you must be having just aging issues". Was a highly active 74 year old with multiple hobbies and good diet and overall health before the PMR, now still the exhaustive fatigue and saddle/shoulder pain that has decreased but is ever-present, especially since being cut off pred "because it has too many side effects for you to continue even on a low maintenance dose".

I only dropped down to 1.5 and suffered like you are... when I went back on it I went to 4 and then dropped to 2 again in a week and feel great and just like ME again. I think the side effects will be worth it. Considering my age 78.. maybe not if I were 30 but feeling good now seems a fair trade off for 2 years or so when I am 99. and the side effects get me. Who knows. Hope you can get some relief and be active and feel good again!!!

I am on Methotrexate ( 6 pills once a week) & so far have had no issues- thank goodness! What injection are you receiving?

Off prednisone since mid-September, slow taper for 18 months, PMR still in remission, but the fatigue and endurance has suffered since the taper reached 7mg. I can be physically active and mentally sharp until about noontime, then it is all down hill for the rest of the day. Having PMR has aged me considerably in the last two years. Cortisol test came back above normal, so Adrenals are working. Seeing an endocrinologist in January. Maybe this is 'normal' for a 76-year-old but I don't like it.

73 year old woman who started with PMR just about 1 year ago, worst pain I had ever had before treatment for this disease. After a dose pack before knowing what was going on, I was started on 15 mg. Reading all of your stories about tapering and the continued pain sx and decisions about getting off prednisone totally or increasing, I am leaning toward going from the current 2 mg up to 2.5 or 3mg. I can live with pain of course, but the quality of my life which used to be very active and without pain to this continued pain, improved with Tylenol but never gone is no fun. And I am generally more tired and fatigued. I want to get off steroids, tired of all the skin tears. Started tx with Fosamax for osteopenia progressing towards porosis. Trying not to try injections, side effects and COST. All your storied help me on path with this terrible condition. Thanks for sharing and may we all get the most out of our lives.

Totally agree with you re the fatigue and endurance. I need to see if we have done a cortisol test in my past and will discuss this with my rheumatologist when I see my rheumatologist.

I had to take alendronate for bone protection while on prednisone. As for tapering, it took me half a year tapering up and down by 1/4mgs. between 3mg and 1 mg. before I could stop so be patient.

When I was diagnosed with PMR in 2021 I was told by my rheumatologist that I would be on prednisone for about a year. I also got similar information on the internet. It's been over 3 years and I have since found out that many people do not get off prednisone in a year. There's an excellent detailed video about PMR by a medical school professor ( link below) in which he states that 25% of PMR patients are still on prednisone after 5 years. I feel better knowing my situation is not that abnormal and wish I'd had more accurate information at the start.

Linda Gilbert

You might be better off skipping the rheumy and seeing an experienced internist. How can you openly argue with such an idiot? I saw a terrible one too, told me he didn't know PMR was painful.