Diagnosed with PMR 2 1/2 years ago. How do I manage the extreme pain?

I’m guessing that you don’t actually have PMR. Prednisolone is the only medication that takes the pain away and it will work if you are at the correct dose. Most start at 15mgs, but many like myself, at 20mgs. If it is PMR, you will feel relief quite quickly, in just a couple of days. It doesn’t “cure” the condition, but it treats the symptoms (pain) while PMR burns itself out, whenever that might be. Once on a dose that works for you, you can commence the long and slow taper to a dose that still works but is far less than the initial dose.

Hi, does anyone post to this thread anymore? I would love to have an updated conversation.

Hello @asklizzie, Welcome to Connect. Yes, there are a lot of us members who struggle with polymyalgia rheumatica (PMR). I have had 2 occurrences of PMR myself but it is currently in remission and has been for almost 2 years. My treatment for both occurrences was started at 20 mg prednisone. The first time it took me 3 years to taper off. The second time it took about a year and a half.

Have you been newly diagnosed with PMR?

After tapering down to 6 mg daily of Prednisone and doing quite well (for 10 months) all of a sudden my fingers are very stiff. Toes and left foot are stiff with pain and seem to be swollen. Wrists exhibit slight swelling also though not particularly painful. Is this PMR?

@maija, That's a great question. I did have some swelling/pain in my right foot during my first occurrence with PMR. It was caused by gout and I was given another medication to help get rid of the uric acid causing the issue. Are you able to ask your rheumatologist or doctor?

Sometimes when I was tapering down and the pain came back, I went to the previous dosage or increased the dosage by half of what I descreased it before the taper.

Hi john, thanks for reaching out to me. Yes, I was diagnosed officially this past November. I woke up one morning in October with this extreme pain in my lower back on both sides. I thought I was having sciatica issues like before but the pain was unfamiliar. This went on for a few weeks with the pain expanding to my shoulders, knees. Etc. I finally went to my primary for blood work. Weirdly for me, my panels were all negative for rheumatoid and other matters. My test result were fine, but, because my complaints were so familiar to my doctor, she pre diagnosed me with PMR and sent me to an RA specialist. My first visit with the RA was just a consult. She was hesitant to label my problem as PMR because I was too young as she said and don’t fit any of the demographics. See, I’m a 51 year old African American woman whose otherwise super healthy. They wanted me to take prednisone but I refused to do so until she officially diagnosed me. While waiting for my next appointment and results of additional blood work, I began to do more research on PMR and steroids and didn’t like what I saw. I don’t like the fact of getting my body conditioned to a drug like that. I have anxiety issues with steroids and just know it will require additional drugs and so forth. Anyway, I decided not to take the drugs and try other things for now. I have found that THC and CBD helps me a lot. I live in California where it’s legal so I’m able to try it without fear. I just wanted to connect with people like me because I don’t think outsiders truly understand. Not sure how long I will last without drugs but I’m willing to see. It’s super weird that I have it in the first place.
Thanks for listening.

Hi @asklizzie, I had the same concerns about taking prednisone but it just made me work harder to taper off as soon as possible. I have no medical training or background but I don't think THC or CBD does anything to address the cause of the pain. It just masks the pain so it's not as bad. The prednisone primarily (IMHO) addresses the inflammation which causes the pain. One of the other things I did to help was tried to eat healthier and more foods that are anti-inflammatory. Here's an article that provides information that may be helpful.

What to eat if you have polymyalgia rheumatica -- https://www.medicalnewstoday.com/articles/321683.php#the-pmr-diet

Thanks for the link. I will check it out. You are correct, THC and CBD only mask it but since there’s no cure, then we are all masking. I believe diet plays an important role.

Forgot to mention that one of the other things I do is take a tablespoon daily of liquid Turmeric (Qunol) which helps with inflammation.

I will try the Tumeric. also, just read the article. All of my favorite foods are on the list. My only struggle will be alcohol and fries, lol. I can do it! Thanks so much for this.