PMR Dosages and Managing Symptoms

I was diagnosed with PMR in July 2022 by my rheumotologist. Mine is only lower extremities as well. Have a hard time walking at times, especially after a day of being on my feet. Did predinose for almost a year (was prescribed prior to seeing my Rheumotologist), but need to get off. Going to start infusions soon. Hoping that works without the side effects.

Hi @granger, I see that you started a new discussion on reducing prednisone but I thought I would respond to you in this discussion - PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/ so that you can connect with other members with similar questions.

@kmeikle1, @ncgal, @tsc, @mymayoid and others may have some thoughts or suggestions on your question -
"Hi, I have another 6 weeks before I can see a rheumatologist. Would like to reduce prednisone but still have same pain level in hips and low back. Do I wait until I'm pain free to reduce medication or start slowly now? Sort of managing this on my own since diagnosed in November."

Hi @davidsonk, Welcome to Connect. Sorry I missed your first post in the COVID discussion and hoping the new treatment helps. Do you mind sharing what type of infusion you will soon begin having? Will you be tapering off of prednisone along with the infusion?

Orencia will be the drug they are using for the infusion. Just hoping my insurance covers this as it is expensive. Doing it by infusion bypasses the liver and kidneys, which should be better.

Orencia has a program to help with the cost. Here's the link if you haven't already seen it - https://www.orencia.com/support-savings/on-call.

There is a discussion on Orencia that you might find helpful:
-- Anyone have experience with ORENCIA (abatacept) infusions for RA?
https://connect.mayoclinic.org/discussion/orencia-insusion-experience/

Orencia (Abatacept) isn't FDA approved for the treatment of PMR so I doubt any insurance will cover it. That doesn't mean it won't work for you. Is PMR your only diagnosis?
https://www.drugs.com/history/orencia.html

There is a study called the ALORS study that is investigating Abatacept for PMR.

"Due to its good safety profile in rheumatoid arthritis and its potential to modulate T cell activation and derived cytokines, abatacept is an attractive agent to investigate in patients with PMR."

I am into pmr 3 years and have gotten down to 6 mg. But symptoms are in middle of night and will try to 5. But discouraged. Anyone else have suggestions, go up go down?

Yes I also have RA as well. She said this will help both PMR and RA. Thank you for the info.

Hello 1942marilyne, Welcome to Connect. Some members have split their dose between morning and late afternoon/evening and it's helped them with the symptoms at night. My first time with PMR took me 3-1/2 years to taper off of prednisone so don't be discourage. I didn't think to try splitting the dose when I was struggling. Usually I just bumped my dose up half of what I tapered down the previous time. Have you discussed it with your rheumatologist?

Inflammatory arthritis and PMR are a bad combination. I took high doses of prednisone intermittently for about 20 years to treat flares of uveitis and reactive arthritis (ReA). I thought I was doing well until PMR was tacked on too. Then I took moderately high doses of prednisone daily for an additional 12 years.

I would have never been able to taper off prednisone until a biologic called Actemra (tocilizumab) was tried. After that, I was able to come off prednisone in 7 months while being monitored by an endocrinologist for adrenal insufficiency.

I think adrenal insufficiency was the main reason that I couldn't taper off prednisone after PMR was diagnosed. when I needed long term prednisone, my adrenals were suppressed. Cortisol regulates inflammation so when the adrenals are suppressed by prednisone, you run the risk of becoming prednisone dependent.

I think Actemra allowed me to reduce my prednisone dose to a low enough level so that my adrenals slowly started working again. It was wonderful to get completely off prednisone after so many years. I'm now prednisone free but I still need to take Actemra. I currently do monthly infusions and I don't take anything else between infusions.

Medicare will pay for FDA approved biologics for RA as long as they are infused. Medicare won't pay for injections because they are considered outpatient medications. Drug plans will only pay a small portion of the cost of doing injections if they pay anything at all.

I hope Orencia (abatacept) works well for you. Actemra (tocilizumab) might be another option for you. My rheumatologist says it would be impossible to adequately treat everything that I have going on. If you ask me, Actemra works very well for me.