My pcp and rheumatologist both have pamphlets and printed information in their waiting rooms about various conditions, diseases and pharmaceutical options.
Has anybody come across any such printed info about pmr specifically? A little booklet about pmr from the doctor would have been very helpful.
I never imagined I would be on prednisone this long.

@pmrsuzie Kevzara worked wonders for me

@pmrsuzie did you take methotrexate and did it work?

@pmrsuzie My PMR showed up in April 2019 and I went until March 2020 before I received the PMR Dx. I have started prednisone and tapered successfully multiple times and each time the pain returns after the taper ends - within 30 days. This tells me my body has not gone into remission.
In Sept 2025 I went to a leading out of state teaching hospital that Dx asymptomatic GCA. I do have some aorta damage and am now being watched by appropriate specialist. My treatment plan has changed as well.
If you cannot taper successfully it may be because you have more than PMR at play. Please push to be reevaluated since PMR is known to burn out in a few years.

@pmrsuzie

January 1, 2019 was the day that I self administered my first injection of Actemra (tocilizumab). I tapered off prednisone about a year later. I took prednisone for 12 years prior to 2019 so it would be hard to say my taper wasn't slow enough.

I wish I would have known about all the pitfalls of prednisone tapering when I was first diagnosed with PMR in 2007. I could have spared myself a lot of time and effort trying to taper slowly off prednisone. According to the following link the problem was recently given a name --- glucocorticoid-induced adrenal insufficiency (GIAI). I think this side effect of prednisone was known but people chose to ignore it in favor of a slower taper or simply staying on low dose prednisone forever.
https://www.ccjm.org/content/91/4/245
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Tapering off prednisone in less than 2 years when IL-6 inhibitors are tried makes me think PMR can go into remission within 2 years. When prednisone was considered to be the only option it took me longer. I belatedly learned that adrenal suppression was probably the main reason why I could not taper off prednisone within 2 years.

I had a hard time getting under 10 mg and relapsed whenever I reach 7 mg. I didn't know my adrenals wouldn't start to recover until I reached 3 mg and my rheumatologist never told me that. I had to be referred to an endocrinologist to get that information. However, a nice person who had an adrenal crisis also said trying to taper off prednisone would be frustrating after the adrenals are suppressed no matter how slowly I tapered. In fact, she thought some of my symptoms which I called a "flare" or a "pain crisis" might have been an impending adrenal crisis.

Anyway ... there were many things I didn't know when PMR was first diagnosed. I still don't know how a person knows how to distinguish PMR symptoms from adrenal insufficiency other than having a cortisol level checked right before discontinuing prednisone.

I learned that 'following the taper schedule and be done', doesn't always happen. No predetermined tapering schedule worked for me. However, my brother-in-law did exactly what his doctor told him and was off prednisone is less than a year. I was ready to tell him to taper slowly but I had to ask him how he tapered off so quickly.

You never know enough starting out with PMR. There is still many things I don't know almost 20 years later.