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

Hi All, I would like to know if any of you, after two mRNA shots and long treatment with prednisone, are immunocompromised? If so, how did you find out? Are the tests reliable and trustworthy.
Simple question. Not such an easy answer I think.

I experienced a very severe and disabling flare of PMR within that began within days after I received the first dose of the Pfizer vaccine for Covid-19. Not realizing that my symptoms were related to the vaccine, I went ahead with the second dose, which led to complete loss of function lasting several months. From the information now available, it appears that I will need a booster shot to ensure further immunity against the virus. I am wondering if a switch to the Johnson and Johnson shot, which is made using a more traditional technique, might prevent another PMR flare. I realize that no one yet has answers to many questions surrounding the virus and the vaccines against it, but I would be interested in any discussions, opinions or insight offered. Thanks in advance to anyone willing to share their thoughts on this.

Good morning Ethan, I’ve been dealing with PMR for over a year. Is there any to physically talk to over the phone? To see what works and what doesn’t? I’m at my wits end.,Thanks. Ray Aka TinMan Fishkill, NY

I was recently diagnosed with PMR after 6 weeks of hip and shoulder pain. Prior to that in the month of July, I experienced general body pain, loss of appetite, tiredness. As we live in a high tick area and I have had Lyme several times, this seemed to me to be Lyme, although I had no bulls' eye or evidence of a tick bite. I saw a NP and had blood tests which resulted in one positive and another negative. I took Doxycycline for 30 days.

In August I had a sudden onset of the shoulder and hip pain with limited mobility especially in my shoulders. As my doctor had recently retired, I was seeking a new doctor. It took me 6 weeks to see my new doctor. She did several blood tests, asked many questions and diagnosed me with PMR. I have started prednisone and have started to feel results.

My questions...Is there any evidence that PMR could manifest itself after a bout of Lyme? Were my Lyme symptoms really the beginning of my PMR?

For 10 weeks I have not been able to participate in many of the activities that I enjoy due to my pain and discomfort. I am an active older adult who just turned 80. Prior to July I was doing exercises, biking 10 miles several times a week and swimming.

Hi TinMan, Mayo Clinic Connect is an online forum where you can connect with other people dealing with PMR, what works and what doesn't and more. Here you can meet people like @johnbishop @tsc @scpartain @mpstetson1 @pam52 @zaa @ncgal @legendts @peggyp and many others. We don't talk over the phone, but we can chat any time on this forum.

You mention that you are at your wit's end. What is your biggest challenge at the moment?

Welcome, Dalby. The symptoms of Lyme disease can mimic symptoms of PMR. I'm not a doctor, but my understanding is that prednisone (corticosteroids) are contraindicated for Lyme disease and can lead to worse outcomes.
- Steroid use linked to worse outcomes in Lyme disease-associated facial paralysis https://www.sciencedaily.com/releases/2016/09/160906182119.htm

The fact that prednisone is helping and your feeling results seems to substantiate the PMR diagnosis. Did you notice any improvement after taking the antibiotic Doxycycline for 30 days?

Hi @tinman2020, I would like to add my welcome to Connect along with @colleenyoung and others. After I was diagnosed with PMR by a Mayo rheumatologist, I was started on 20 mg of prednisone daily. It took away all of my aches and pains but then I started my slow journey of tapering off of prednisone. It took 3-1/2 years going slowly. One of the things that helped was keeping a daily pain log which I recorded how much pain I felt on a scale of 0 to 10 along with the dosage of prednisone I took for that day. This allowed me to look back over time to see if I may be trying to taper too fast. My rheumatologist did give me a suggested tapering schedule but also told me to listen to my body and not go down too fast.

After I was able to taper off I went 6 years before my PMR came back. The second time I started looking into additional changes I could make that may help reduce the inflammation to help with the PMR. I started eating healthier, tried to exercise a little each day and just make better choices day by day. Here's some information that you may find helpful -- 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/

Are you able to share a little more about what treatment you are currently following and what you have tried?

My Lyme (if it was Lyme) in July was not treated with corticosteroids. I did not start Prednisone until 6 weeks later when my PMR was diagnosed.

Hi Dalby, we must be twins! I turn age 80 in November, still have PMR, also Lyme. I took myself off Pred for PMR in August after 7 months, but do daily massage & exercise of my achy hands & arms & use heat when it’s bad. I’m allergic to aspirin and NSAIDS so use only liquid Tylenol for pain. After just ONE doxy pull I went into anaphylactic shock, had to go to ER. Since then I’ve had anaphylaxis twice more so can’t get the Covid vaccine, which could kill me. I’m also vegetarian, eat no meat or fish or other seafood, but do eat eggs and dairy. I have a big delicious multi veggie salad every day! I have never smoked, used drugs or alcohol. To keep flexible so as to prevent falling, I do my own regimen of daily full body stretching against my kitchen counter and door jams (if I got on the floor I wouldn’t be able to get up!). Point being, I feel like I know my own body better than any doctor, so by doing research, keeping a positive attitude, prayer, and trying to make wise choices, my life is very good in spite of aches and normal age limitations. Life seems to be a 24/7 journey of personal discovery and renewal. I believe we all have answers within ourselves. Keep searching, trust yourself, and most of all, keep the faith! You can do it! 😊

Thank you for sharing. I have osteoarthritis with 2 knee replacements. I too am careful about staying flexible. I eat a balanced diet, have an occasional drink, but never smoked or used drugs. I have no known allergies. We have a YMCA in town and the Erie Canal Towpath across the street and a state park in our back yard. This gives me plenty of opportunity to bike, walk, swim, and participate in Active Older Adult classes. We have to know our bodies and advocate for ourselves!