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

That would be bold assumption, maybe even a tad risky, given the science saying prednisone causes us to be immunosuppressed thereby countering vaccines. Sorry to be a spoil sport.
I tend to be a bit cautious.

I am currently taking 24mg of methylprednisolone. I was taking 16 but flareups were occurring. My doc wants me to try to get back to 16mg - I tried and after 3 days I had a flare. So I went back to 24 and decreased to 20mg - 3 days later the pain came back so I increased again to 24mg. Today is day 3 on 24mg after the flare and tomorrow I will try again to go down t0 20mg on the way to getting down to 16mg. I am also taking methotrexate injections (0.52) weekly but had to stop this week because of medications for a sinus infection. I have a hot tub and using it every night seems to help. But I certainly wish I could sleep - never slept last night until 6am this morning and then only for 4 hours! On the plus side I got a lot of housework done!

I am newly diagnosed with PMR. I am 76. Have not yet started Prednisone but will likely end of this week. Sed rate 48. CRP 4.7/5. Very uncomfortable since March 13. Wondering if it was triggered by 2nd Moderna vax which was Feb 24! Shoulders, neck muscles, upper back, some hips...trouble lifting covers when turning at night. Pain in shoulders lying on them. Pain in elbows when kept in flexed position while sleeping. I feel like I am constantly in a raise-my shoulders position, tensed up for these months. I couldn't understand why. It was not anxiety that I know of. Finally talked to my oncologist (free of pancreatic cancer 5 years now after treatment--was given 2 months to live by a surgeon who found my belly full of carcinomtosis after having pancreatic resection a few weeks earlier...small bowel obstruction developed and had to be operated on...this is when the cancer was noted in my small bowel and peritoneum. LONG REMISSION. Grateful. JUst saw a rheumatologist last week. She says, probably PMR. We will talk this week to decide on treatment. Very painful and limited in activity because of the muscle tension and stiffness. Other issue I have gained 25 lbs in a year with eating 1000 cal/day. All I want. And I a type II diabetic on insulin long and short acting. New since March 2020. Very upset about the weight and there seems to be NO reason evident (I can't exercise bec of the pain...). But 25 lbs too much for limited activity and very careful diet. Scared of the impact of prednisone (I think it will be 10 mg as a trial/day). I was NORMAL weight, on the trim side, before this gain. Okay, that's my intro. Glad to find this group. Thank you. Sharon

I am taking prednisone from a bad cough and heard to eat before taking the drug. I have a piece of toast with marmalade. But if I take milk to counteract the upset stomach instead, how much milk is necessary?

Hello all. I was just diagnosed with PMR one week ago and I’m still trying to wrap my head around it. On one hand I am extremely grateful to know what the heck was going wrong with me. On the other hand, The thought of living with this chronic disease worries me. You see, unlike most folks on this Site I am not even close to retirement and able to pace myself through this. I am currently 46 years old I have a whole lot of work ahead of me. Apparently I’m not the norm when it comes to the first onset of this disease. Wondering if anyone else out there was diagnosed at a young age as I was? Also a bit concerned With the prednisone side effects moving forward. Any info on this would be great. Thanks

I’m going on the assumption that we are. However, no one knows for sure. I’m glad you are feeling better.

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