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

Thanks for chiming in, J!

I do see a rheumatologist ( only one available in a hundred miles) He's not very specific about things. In and out. Guess Ill call his office, the pain is so bad...Am I ever gonna get off this stuff 😳
Thank you so much for your helpful answers Teri. Im glad to know about the tylenol.
Take care and I appreciate your time and good answers. This is all hard when I suffer with depression and it's winter up here.

Hi @oldhen, if it is PMR, the proper dosage of prednisone is supposed to give dramatic relief from symptoms. Not all my pain went away immediately, I had very stiff/sore neck, little stabbing pains from my ear to my nose, a tender scalp, all symptoms of Giant Cell Arteritis confirmed by a biopsy. Then my dosage was increased to 40 mg Prednisone and those pains virtually disappeared. Good luck with your doctor!

Hello, I was diagnosed with PMR two months ago and had wonderful results with the initial higher doses of prednisone. My doctor is trying to taper my dosage down to .5 mg but I am more able to function with 10 mg. Interested to know other peoples' experience.

Hi @annettetompkins Is your doctor trying to taper you down from 10 mg to .5mg? That sounds kind of extreme.
I was at 40 mg of prednisone initiallty for Giant Cell Arteritis. I tapered down 5 mg every two weeks until I got to 10 mg, then tapered down 2.5 mg for two months until I got to 5 mg. Now it's taper down by 1 mg every month as tolerated. So far. so good on 4 mg. Good luck!

Hello Teri, thank you for your comments. I got off to an awful start just getting Prednisone. I had no idea how to evaluate the medical care I was getting because I have been blessed with wonderful good health (I'm almost 75), and only saw my GP once a year. He did diagnose me right away, prescribed Prednisone but didn't call in the Rx for a week. Even after repeated calls, the Rx wasn't ordered. After seven days I dragged myself to his office in tears and refused to leave until the order was sent to the pharmacy. Relief was instantaneous, but there was no follow up, so three weeks later I was in the same situation. I finally saw another doctor in the practice who is now trying to taper me down from 10 mg to 5. This has not worked so far, and I put myself back on 10 mg. This week I am trying to reduce the dose to 7.5 mg. This forum is really educating me as to dosages and working through the medical field. I see that you are in Canada, whereas I am in South Carolina and a Medicare patient. Were you immediately referred to a rheumatologist? I am wondering if I should take matters in my own hands and find one.

Hi @annettetompkins that is a true horror story! I'm sorry that your doctor was so blase. Too bad he couldn't experience the pain of PMR, then he might have phoned in your prescription sooner!
I am in Hawaii, on a neighbor island to Oahu, so not all medical procedures are available here. I had the symptoms of PMR and GCA for a year before diagnosis, partly my own fault for assuming I had fibromyalgia, and then the fault of my Primary Care Physician (PCP) who didn't follow up when my inflammation markers were slightly elevated. Long story short, I developed shingles (after having had the vaccine a year prior), an infectious disease specialist whom I know started reviewing my lab work, suspected Giant Cell Arteritis, and told me what blood tests to ask my PCP to order. He was quite resistant, but I pushed him. My inflammation markers were off the charts, then I was referred to a rheumatologist, and within a week had the temporal artery biopsy and a diagnosis.
If you can see a rheumatologist for treatment, that is best.
What I've read, prednisone has to be tapered slowly, as it takes over adrenal function. My rheumatologist put in a standing order for me to have a CRP blood test every month to monitor inflammation as I taper the prednisone.
Another thing - about 30% of people with PMR develop GCA. Be on the lookout for changes in your vision, headaches, tender scalp, trouble chewing food, lack of energy, loss of appetite. I had a neck so stiff I couldn't turn my head. Especially if your vision changes (I had a couple bouts of not being able to see out of my right eye, which I stupidly ignored) it's considered a medical emergency. Untreated GCA can result in blindness or stroke. I don't want to scare you, but be on the alert. My mother-in-law had GCA, diagnosed in her 80s, and lived to be nearly 100. All the best to you as you advocate for yourself !

I too was being treated by a PCP and had a ragged start to diagnosis and treatment. I was on and off prednisone with the usual tapering. When the doc finally had my inflammatory markers measured, I was referred to a rheumatologist. And I think it's a very good thing to have a rheumatologist treat you. There are so many side effects from the prednisone and the rheumatologist is being diligent at monitoring things like bone density, kidney function as well as the inflammatory markers. When I got to 10 mg of prednisone he had me start a taper of 1 mg per month. Now I am at 5 mg and my next steps will be to reduce prednisone by 0.5 mg per month. So far, so good, no reoccurrence. And at 5 mg I'm sleeping much better. As much as I'd like to be off prednisone, I'd rather take it than be in the pain I had from PMR.

Thank you for your good advice, and my sentiments exactly. Before I had PMR, I didn't understand how people became addicted to pain killers, but I have certainly become humbled! One thing that has helped me is getting up very early in the morning, eating a light breakfast, taking prednisone and then going back to bed for an hour or so. I find that when I do get up again, the worst of the stiffness and pain is gone. Of course, as a retiree, no one is waiting for me to clock in early in the morning!

I, too, am a retiree and have a somewhat similar routine for getting the benefit of prednisone before setting off on the day's adventures. I get up, eat one Belvita biscuit, take my meds, get a cup of coffee and the newspaper. I go back to bed, drink coffee and read the paper for 45 minutes or so and then get up and go.