What steroid dosage did you start on? Did you find the right dosage?

"Would you mind sharing what medication you took to take off the Prednisone? Do you still take it? Is your PMR gone? Your experience sounds complicated and enormously challenging. How is your quality of life now? If these are too personal to answer I understand."

These questions aren't too personal but answering these questions becomes a long story when I retrospectively recall everything that happened. Without all the details I will say tapering off prednisone wasn't going well when Actemra (tocilizumab) was suggested as a possibility if I was willing to try it. I didn't have any hope that I would ever be able to taper off prednisone. Fortunately, someone who had an adrenal crisis was encouraging me to try to preserve whatever adrenal function I had left.

Actemra (tocilizumab) was FDA approved for GCA in 2017. My rheumatologist believed that Actemra "should work" for PMR too but didn't make any promises. My rheumatologist said Actemra might be my best chance of ever getting off prednisone.

I don't know exactly what happened but within a couple of months I was able to taper from a prednisone dose of 10 mg to 3 mg. I was afraid to taper any lower because of what I thought I knew about cortisol levels and the potential for an adrenal crisis. My rheumatologist and an endocrinologist agreed and said I should stay on 3 mg while my cortisol level was monitored.

About 6 months later, the endocrinologist said it "might be safe" to stop prednisone from her standpoint because my cortisol level was better. I wasn't having any PMR symptoms but my rheumatologist said a relapse was a possibility. When I stopped Prednisone, I had a relapse but it wasn't PMR. It wasn't GCA either but an ophthalmologist put me back on 60 mg of prednisone and stopped Actemra. That was when things really got complicated because the ophthalmologist said a different biologic called Humira was "optimal" for my eye condition.

After 6 months on Humira and still being on 15 mg of Prednisone it was clear I would not be able to taper off prednisone again. The pain was consistent with PMR although I can't say that for sure. I also have an autoimmune inflammatory arthritis and Humira should have worked for that condition.

Eventually, my rheumatologist said I could choose either Actemra or Humira. I choose Actemra. My rheumatologist increased the frequency of my Actemra injections and said to try to taper off prednisone again. Within a couple of months I was off Prednisone for the second time. No relapse of anything since then and that was 2 years ago.

The longer I stay off Prednisone the better I feel. I have stopped nearly all my other medications most notably 3 BP medicationss and 1 medication for high cholesterol levels. My intraocular pressures have improved. I had premature cataract surgery many years ago.

I still take Actemra but now I do a monthly infusion rather than the injections.

If you are interested, a biologic call Kevzara was FDA approved for PMR last year. Kevzara and Actemra aren't the same but they share the same classification. Both medications are IL-6 inhibitors.
https://www.ajmc.com/view/sarilumab-indication-expanded-to-include-polymyalgia-rheumatica
I don't want to promote either of these medications because they are risky too. However, my rheumatologist thinks it is better for me to be on Actemra instead of Prednisone for the rest of my life. I don't seem to have any side effects from Actemra.

All I know is that Actemra doesn't suppress my adrenal function like Prednisone did. My quality of life has improved immensely.

My rheumatologist doesn't think PMR will ever be gone. He says when autoimmune disorders last so long, the immune system develops a memory for the tissues it has been attacking.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4067599/#:~:text=T%20lymphocytes%20in%20autoimmune%20diseases&text=An%20important%20characteristic%20of%20the,immune%20system%20learn%20with%20experience.
I don't know if this is true. I hope to stop Actemra at some point to see if PMR is gone. I suppose if my immune system has a memory then it can also forget about things.

I was originally and preliminarily diagnosed with PMR by my family doctor. After an exam, basic blood tests, and my descriptions of what was going on, she started me on 15 mg Predinisone daily until I could see a rheumatologist, which required her referral. That dosage did allow me to function again; I had gotten to the point where I was so still, I was barely able to walk but the 15 mg addressed that. I still had significant upper body pains (I call it the 2 X 4 syndrome, feeling like I'm being whacked by one). I saw a rheumatologist about 2 months later. She started me on 30 mg, which definitely did the trick. After about 9 months, I reduced to 20 mg and did fine on it, no pains. I had problems reducing from 20 so she tried Hydroxychloroqine but I had a nasty allergic reaction to it. We tried methotrexate but it had no effect. I switched doctors shortly after this because of communication issues. The new rheumatologist had me go down to 15 mg and I had mostly good days. I've been reducing from 15 to 12.5 mg the past 2 months by alternating doses on a daily basis. Once I stabilized, I started on 12.5 mg. I see her in about a month and expect to discuss another reduction, perhaps to 11 or even 10 mg daily.

I started on 20mg of prednisone. I felt relief but not total. Started to reduce and pain increased, went back to 20mg. This continued over 6 month period. I decided to get second opinion from another rheumatologist. She recommended I start Medrol because I wasn’t metabolizing prednisone. Medrol is a steroid. She explained the difference in how it metabolizes. She started me on 8mg which is equivalent to prednisone 20mg. I felt relief within 2 days!!! It’s been 5 years since I have been diagnosed with PMR. I am currently on 2mg of Medrol daily. Not sure if I will ever be off it. Or if I want to try other medications.

I started off on 10mg in early December, I had joint pain & severe swelling in my hands. I found relief after the first dose. I have been tapering since the end of January and am now on 5 mg (just two days). I have mild pain in my hands and hips on this dosage. I will persevere for a couple of weeks and see how it goes, I would love to be able to stay on just 5 mgs.

I’m fairly new to PMR so I may be totally wrong but from the comments I’ve read on this subject, and my own experience, you should have felt almost immediate relief. When I was diagnosed, my rheumatologist started me on 12 mg and I had relief within about 6 hours and no pain by the next day. I’ve read on various chat groups that prednisone is the only medication that works for PMR so it’s rather troubling you’re not getting any relief from it. You may want to discuss this with your doctor/rheumatologist. Good luck. I hope you find the soon!🔜

Welcome @jkristinsson2014, The average starting dose if PMR is suspected is 12 to 25 mg prednisone. My PMR is in remission now but I've had two occurrences and was started at 20 mg for both. You might find the following discussion helpful:
--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/.

Do you keep a daily log with your level of pain when you wake up and the prednisone dose for the day?

Thx for this John. I have been keeping a log of pain levels since tapering to 5 mg.
One question though…is it suggested to take prednisone at night or in the morning? I have been taking it in the a.m. but notice pain during the night.

I’ve always taken the dose in the morning but some people have found that splitting the dose between morning and late afternoon or evening helped with the night pain.

Splitting the dosage is a good idea. I will try this.

I'm relatively new here. PMR symptoms came on like a tsunami in mid-November. After dozens of tests, my GP suspected PMR and started me on 20mg of Prednisone. It helped for 2 days, then I the debilitating pain returned. Saw a rheumatologist in mid-December who diagnosed PMR and said I was likely prednisone resistant, so he started me on 8mg of Medrol. Same thing.... better for a couple days, then intense pain returned. Increased Medrol to 48mg for 2 days, tapering by 8mg every 2 days until I got to 8mg. That was brutal - horrible side effects to the high dose steroids but the pain was significantly reduced. I had to stall and increase a few times but got to 8mg with tolerable pain after about 4 weeks. Stayed on 8mg for about a month and then started tapering by 1mg every week or two until I got to 4mg (3 weeks ago). I'm achy and stiff in the mornings but it's very tolerable and I’m ready to go lower and see what happens.

My goal is to get completely off Medrol in the next couple of months. My rheumatologist said if I'm able to, then I do not/did not have PMR because EVERYONE needs long term steroids/biologics (minimum of 1 yr, usually longer). That deflated me because I’m sure I have PMR.

Hope to find others who were successful in getting off steroids in less than a year.

Grateful for all the helpful information and stories shared!