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

Hi @carol75 I had an incredibly stiff neck. I couldn't turn my head, but had to turn my whole body to look to the side. The pain was unrelenting on left and right sides down the back of my head, but it went away on 40 mg of prednisone. My temporal artery biopsy was positive. Good luck, I hope you get some answers and some relief soon.

So sorry that you had to be going through that. I know exactly what you were feeling. I’ve been on 40 mg since the beginning of August but it just keeps getting worse. I’m hoping that the new medication will be approved so I can get started. I appreciate your feedback.

Hi Hilary @hilary62, I see this is your first post in the PMR group so I was happy to see you are down to 1mg prednisone already. I'm sorry to hear that your doctor missed the PMR diagnosis. It took me almost 3 years to get down to 1mg when I was first diagnosed with PMR. Do you keep a daily pain log along with your prednisone dosage to help you taper off?

Hi @carol75, Thank you for your well wishes. I hope you are feeling better soon. With the biopsies of your temporal arteries negative, does your doctor think it's something else?

No he’s pretty positive it’s GCA. I’ve read up on the negative results and it does happen. This is like nothing I’ve ever experienced before.

Has anyone else been perscribed KEVZARA for PMR? If yes, what side effects did you experience?

@carol75 . Hello Carol. You and your doctor are correct. Sometimes a patient might have negative temporal artery biopsies and still be correctly diagnosed with GCA.
When I had my biopsy, I had already lost most of the vision in my right eye. As the surgeon was performing the biopsy he exclaimed several times to his nurse assistant "Look how BIG it is!" (the swollen artery). He told me afterward that he knew I had GCA, without even getting the biopsy results.
I was shortly thereafter quickly admitted to hospital directly from the office of my Internal Medicine Specialist for three days of 1000 I.V. units of Prednisone per day, in an effort to save the vision in my other eye. Success!
Good luck to you. It's a tough journey and you're right to say you've never experienced anything like it before. Warmest wishes, Laurie ❤

Hi, I am glad to find this platform for PMR patients to share their stories. I am a 65 year old active and healthy woman and have had PMR for 2 years now. I managed to get off of prednisone (finally) on Oct. 1, 2021. However, my pain has now returned over the last couple of weeks and I plan to see my doctor tomorrow. I don't want to go back on prednisone, but I sense that it is the only thing that will reduce the pain. I am wondering if anyone has tried Relief Factor and what your experience has been. I have been taking it for about 10 days now at the recommended initial dose and there has been no improvement in my pain level so far. I spoke with a Relief Factor consultant and they have no client testimonials from PMR patients using Relief Factor as of this posting. I am also concerned that my flu shot on Oct. 8th may be what has triggered this relapse. I also had a similar relapse in the spring of this year after my second Moderna jab; and I'm not feeling good about getting a CV-19 booster at this point. I welcome any feedback, comments, suggestions from anyone with similar issues and concerns.

Martie, Kevzara is usually prescribed for rheumatoid arthritis. Is you doctor suggesting this medication for PMR?

Hello @kfassler, Welcome to Connect. I'm really sorry to hear your PMR came back. I don't blame you for not wanting to go back on prednisone. None of us like being on prednisone but it is the gold standard when it comes to treating PMR. I have no experience with Relief Factor but unless they have done clinical trials with PMR it would be a no go with me. If you've been taking it for 10 days and there has been no improvement in your pain level that would be a big red flag for me that it's not going to help.

I have had 2 occurrences of PMR. The first lasted 3-1/2 years, the second lasted 1-1/2 years. Both times I started with 20mg prednisone and the pain was gone within a few hours of taking the dose. From your description it sounds like you have only been off of prednisone for about a month which is not long. I think it's really good that you are seeing your doctor or rheumatologist tomorrow to discuss treatment.

What I think helped me the second time around to reduce the time it took me to get off of prednisone was I made some lifestyle changes - If that's something you haven't already considered or are doing, you might want to give it a try. -- Diet and Lifestyle Changes That Can Aid in the Treatment of Polymyalgia Rheumatica: https://arthritissj.com/diet-and-lifestyle-changes-that-can-aid-in-the-treatment-of-polymyalgia-rheumatica/

Can you let me know what you find out at your appointment tomorrow?