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

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.

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.

Dear @oldhen are you being treated by a rheumatologist? When I started the taper, my doctor told me to go back up to the higher dosage if my symptoms returned. Tylenol is safe with prednisone and NSAIDs are to be avoided. But prednisone calms down the immune system.

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 there. I recommend you ask your doctor to prescribe 1 mg. prednisone. Once you reach 10 mgs. you should only drop 10% at a time. I went even slower and went to 9.5 for a month and then 9. Slow and steady seems to work for most people.

Darn. Do you know why NSAIDs are to be avoided? I haven't heard that. I find I need Ibuprofen from time to time and it helps a lot. I don't think Tylenol works as well as it doesn't reduce inflammation.

Hi @abbeyc the information sheet on Prednisone says "Some products that may interact with this drug include...NSAIDs such as aspirin/celecoxib/ibuphrphen." It says that if your doc has directed you to take low dose aspirin, continue to take it, unless your doctor directs you to do otherwise. I do take low dose aspirin because people with GCA are at high risk of developing aortic aneurysms down the road. Maybe best to check with your doctor or pharmacist if it is okay to take the ibupprofen. Tylenol doesn't reduce inflammation, but relieves pain. The prednisone is supposed to reduce the inflammation.
Always take the prednisone and Ibuprofen with food. Take care, Teri

Thanks so much. My Rheumatologist told me to take low dose aspirin also due to blood clot concerns My Rheumatologist gave me Celebrex before she put me on Prednisone (while we were waiting on blood test results) and my primary doctor said she'd rather me take Celebrex than Ibuprofen but I think Celebrex has lots of warnings and side effects also. I am going to get a second opinion on all of this on 1/31. Thanks for your insight! Much appreciated!