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

My first day off prednisone! Hope I never have to be on it again!!🙏🏻

@caroljeand Congratulations! I had some minor issues a couple of weeks after I stopped, but nothing too serious. I felt a little depressed and tired for a couple of weeks. A month after I stopped I noticed that my metabolism was back to normal. I could eat more and burn it off. I felt like the prednisone was completely out of my system after about 4 months. But maybe you will recover faster than that.

@caroljeand

Let's hope so! I don't want to stop the celebration but the game isn't over just yet. Let's give it a few months and maybe a year before celebrating too much. It is okay to be happy with how things are currently going.

I remember when I was thrilled to be off prednisone for the first time in 12 years. I was probably too giddy. I was excited about the "leap of faith" I did when I stopped prednisone. The excitement was short-lived because within a couple of weeks something happened. I was utterly devastated when an ophthalmologist told me to take 60 mg of prednisone again. Actemra was working for PMR/GCA but my ophthalmologist said Actemra wasn't going to work for uveitis.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
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Fortunately it was only another 6 months until I tapered off Prednisone the second time. My ophthalmologist switched Actemra to Humira because it was supposed to be optimal treatment for uveitis. I had to be switched back to Actemra before I was able to taper off Prednisone the second time. My ophthalmologist is now saying that Actemra seems to work for my uveitis. These autoimmune disorders rarely respond in ways they are supposed to respond to treatment so cautious optimism is best.

For many autoimmune disorders ... treatment with long term Prednisone isn't optimal because prolonged corticosteroid use carries significant risks such as cataracts, glaucoma, and osteoporosis and other side effects that restrict long-term use. It seems like the memo wasn't sent for treating PMR/GCA. The belief that Prednisone is the "only option" for PMR/GCA is still entrenched.
https://www.mayoclinic.org/tests-procedures/cortisone-shots/in-depth/steroids/art-20045692

@jeff97
Possibly…I have a great appetite and haven’t felt too many physical issues. Mostly my normal joint pains and some fatigued and weak muscles. I expect it’s going to take several weeks for everything to get back to normal.

@dadcue
I’m just so happy to start a new chapter with PMR. I know how things can turn around on a dime but trying to remain optimistic. I almost feel like I’ve been let out of jail having to be a prisoner to that pill, making sure I remember to take it on time every day. Hopefully Kevzara does its job and I can feel more normal.

@jeff97 Never up your dose of any non-water soluble vitamin or mineral without using blood work and a Doctor. Both vitamin D and K2 are NOT water soluble and will do significant damage to organs if the levels are too high. Do not play games with what you think is a vitamin deficiency get a simple blood test from your doctor to be sure and get the correct dosage only if needed. A large number of Kidney, and Liver disease and failures come from people taking too many non water soluble vitamins and minerals.

@caroljeand Good Job using the blood test and doctor, my vitamins and minerals are checked every 6 months in my blood work. I am at 4,000 units and that for now keeps me right at the lower acceptable level. All vitamins and minerals that are not water soluble should never be taken without a doctors advice and blood labs for correct dosage.

@smj

I also had a PMR flareup after Pfizer Covid vaccine in October 2025. I’m still in flareup while on 2 doses daily, one dose 1 mg and one dose 2.5. Pain gets better mid-day but never completely gone. Fingers very swollen, had to have my ring cut off. Getting harder to dress myself in am, because symptoms are better in pm. I am 81 and female.

Prednisone is pain reliever but be aware

@ruralgal76

One time my rheumatologist tried to "reframe" the way I thought about Prednisone. She said Prednisone was only intended to control the inflammation caused by PMR. She said Prednisone wasn't intended to relieve any and all pain that was being caused by my other medical conditions.

What she said made me think about it. It was true that I was told distinctly that reactive arthritis and uveitis which are other autoimmune conditions weren't treated with long term Prednisone but it works great in the short term. My other autoimmune conditions had better treatment options that actually prevent flares and were safer than long term Prednisone. This is also generally true for people with RA and other autoimmune conditions as well.

I had another condition called trigeminal neuralgia that was NOT autoimmune related. A neurosurgeon told me prior to surgery that he usually saw a list of pain medications a "mile long" for people with trigeminal neuralgia. He didn't see any pain medications that I was taking. I pointed out that I only took Prednisone because it worked "reasonably well." The neurosurgeon didn't consider Prednisone an appropriate pain medication for trigeminal neuralgia. That was a short time after an emergency room doctor gave me IV steroids because I had the worst case of trigeminal neuralgia he ever saw.

I got quick relief from IV steroids however, I was referred to the neurosurgeon when an MRI scan revealed the cause of the problem. I was taking Prednisone whenever I have attacks of trigeminal neuralgia pain. The neurosurgeon told me after surgery that prednisone might have helped the pain but prednisone wasn't ever going to fix the problem.