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

I'm 70 years old, have had PMR for 3 years plus. It never goes away! I don't have "flares"; I am in constant pain, especially when I try to walk. Also have GCA, with its own set of symptoms. I also have fibromyalgia, which just complicates the pain (where and when). I'm diabetic, and have stage 4 kidney disease. That's enough ailments for now!😂 I have tried 2 biologics, including Actemra, Arava, and will soon be starting Rinvoq, another biologic. Have been on varying doses of Prednisone since the beginning, currently tapering at 8 mg. I just want to know if everyone has pain all the time, or just in flares . I do alright until I try to walk more than a short distance. I have spinal stenosis and my back starts hurting so much that I can't walk! Am going to try physical therapy. They have a therapy pool, so I'm looking forward to that. I sleep in the recliner because it hurts my head to lie down. I'm a mess, so I would appreciate anyone's suggestions. I live alone so that makes it harder to do things. Thanks for listening!

I had the 2nd Moderna vaccination and nine days later developed GCA. After ten weeks I had the Covid antibody test and it showed ZERO. So I assume I am not protected

I have now had both Astra Zeneca vaccinations (only one we could get at the time) and had absolutely no response at all, not even a sore arm. Doubt I will gain much from them. I still wear a mask when entering any shop and usually put it on when getting out of the car in public. Still do all the hand sanitizer and wipes for shopping trolleys etc or other high use areas like toilets if desperate to use them.

Hi reesh, At 70, It wasn't too hard for me to come to terms with PMR + GCA. If I was diagnosed earlier in life, I might have felt differently. I did everything to be healthy, diet and exercise wise, but we have no say about our genetics. A friend who's a very good doctor was quick to tell me that when properly managed, these disorders don't impact mortality. My mother-in-law got GCA in her 80s and lived to be nearly 100. On prednisone, it's important to keep moving and do weight bearing exercises, like walking, as it impacts bones. My rheumatologist is okay with my taking calcium, magnesium, vitamin D and vitamin K1. Periodic scans that check bone density are recommended because of prednisone. Also, prednisone suppress the immune system so avoid situations, people, etc., that could put you at risk of infection. If you check out the exercise group, you'll see that overdoing it can cause flareups and the sudden onset of terrible pain, requiring an increase in prednisone dosing. If you haven't gotten one, ask your doctor for a tapering schedule and what to do if pain comes back. Also, be on the lookout for strange pains in your head, neck, scalp tenderness, problems chewing food, and trouble seeing - symptoms of Giant Cell Arteritis, which requires a higher dose of prednisone and which you should let a doctor know about immediately. My doctor friend told me if I had any problem seeing, or with flashing lights to get to an ER immediately - it was an emergency. Pace yourself when doing chores, rest when tired, and know you don't have to be perfect. This group is great because we've all been through this extraordinary experience of PMR, know the pain and the frustration of not knowing what's wrong, often for a long time, and can speak about it openly, vs. bore our friends. I also purchased somethings to make my life easier like an electric can opener, a bidet toilet seat cover, a light weight upright vacuum cleaner and an infrared heating pad (for pain). Since you're still working, check out Title I of the Americans with Disabilities Act, as you may have to request a reasonable accommodation at some point. If you work for a large employer, there may be a policy in place. Also, your state probably has its own laws regarding disability and employment - it's good to be aware of what they are. All the best going forward

Wow, that was a fantastic summary of what we are going through. Oh, how I wish I had received one of these nuggets from my MD. That’s why this site is so valuable for us. You really summed it up beautifully. Thank you for the reminders. It’s 18 months for me and I keep wishing it was over, but I’m slowly (very slowly tapering) and at 7 mg
Don’t want to repeat my too aggressive tapering with resulted in GCA, so I had to start over essentially. Really, thanks for sharing this, every newly diagnosed person would benefit from reading your summary.

Glad you were able to get vaccinated Jeff. I feel your situation. I had the Pfizer and had a bit of a sore arm but nothing like what my husband or son experienced after the vaccines. What dose were you at when you received your vaccine (s)? I was at 9 I think. I’m still quite careful, masking indoors, no dining inside (or much dining out for that matter), mostly outside visits and walks. Wish there was a way to know if we mounted a response. Only time and research will tell. I heard of a NIH study being done right now on immuno suppressed folks (like us) but it’s in progress.

I had problems sleeping on the 40 - 25 mg. dosage of prednisone I was on. The doctor prescribed an anti-depressant at a low dose - Trazodone 50 mg - when needed for sleeping. It was okay, but I still woke up after sleeping a couple of hours and had difficulty getting back to sleep. I ordered slow dose melatonin, then read the warnings, "Do not take this product if you have an autoimmune disorder" so that was a no go. What's been working for me are organic herbal teas - sleepy time or nighty night kind of teas. I wake up after a couple of hours, but can get back to sleep for a couple more hours. I just checked and couldn't find any interactions between prednisone, valerian and lemon balm, but you may want to do your own search or check with your pharmacist.

My Integrated Medicine doctor as recommended taking GABA to help with sleep. I am trying that now.