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

Hi,
I am newly diagnosed with PMR since July and have been on Predisone since then. Started at 20mg and now on 15mg but not responding as well as my dr. thinks I should. I still have quite a bit of pain/discomfort but can manage since I've added Tylenol to my daily regime. I know it's not an anti inflammatory but it seems to be helping. Since I've not responded well to the reduction to 15 mg my doctor wants me to try Kevzara. I'm apprehensive about the potential side effects but not even sure I will try it since the cost is extremely high for me. Almost $2000 every 28 days after insurance. Has anyone had any luck having this administered at the doctors office so that it is covered by medicare part B?

The drug inhibits the IL-6 cytokine that that is instrumental
in PMR symptoms. If your ESR and CRP remain elevated
it may be worthwhile for a trial of several months.
Assuming you don’t qualify for manufacturer’s assistance
program. Keep up your calcium and D intake with active
exercise as tolerated. I can’t find a reference to Medicare
payment for office dosing. Part D could help reduce cost
a bit more. Actemra is another option to research.
Study all your option. It took me a year to make the decision
to start a disease modifying antibody to wean off prednisone.

Thanks for your input. I do take calcium and vitamin d but have not been able to maintain my regular gym routine. I'm trying some warm water aqua exercise but any activity that puts a strain on my shoulders is just not doable, for now. I'll look into the drug manufacturer's assistance program.

I know the back pain started
From muscle strain when I was stubbornly tried to open a window.
I babied it for six weeks because of pain hence all other muscles weakened.
I have been to physical therapist, chiropractor
Hot pack cold packs, pain pills immoderation, with no
Comfort.
What I want to know with this decease are muscle able
To generate repair or are they damaged beyond repair?
Haven’t found anyone that
Can answer that question.
Now I have pneumonia
Another complication assuming from less activity. ???

Reading through all of the suggestions, comments and concerns have helped me learn so much more about PMR. I posted before feeling I was on the path to having PMR back in June but my PCP said my blood work didn’t support PMR diagnosis and the fact that stiffness and pain started in my knee. I have been vigilant in my communication with PCP as pain spread to other knee, the back, the shoulders, fingers and I think my jaw too. He requested a rheumatoid panel but only C reactive protein was high. He wants to put me on a trial of 20 mg of prednisone but he still questions if it is PMR. I have requested an appt to discuss my concerns of starting a strong medication as an experiment to see if I have PMR. Also I want to get the next Covid vaccine, flu and RSV vaccine but not clear if this should be done. Sounds like with prednisone I could be more susceptible to rising cases of these viruses. I have no other health issues and only on daily statin. So many questions have been answered through this site, so many more questions keep popping in my head. Thanks to all who post. Is this my new normal or is prednisone the next step??

I cannot answer those concerns. I'm knowledgeable about anatomy and movement as it is the basis of my work, and I have taught it to people in my trade (massage therapy), both as a class and training a couple of apprentices. I have long had a bad injury to my knee, but recently it began to improve, and the PMR did not slow that process. As to the pneumonia, there is an ancillary condition that can result in that and you should perhaps be tested for it.
As a fellow 79 year old I sympathize with stubbornly doing things that are really not a good idea at my age. Working on that part! Finding a balance between what I can do and can't, and a need to retain whatever independence reasonably remains is tricky.

My blood work never came back and I was diagnosed solely on symptoms. Has anyone else had this experience?

Why doesn’t your doctor try upping your prednisone? I’m not a doctor, but just curious. Every medication, including Tylenol, has side effects. Seems like is a decision on what works best vs side effects.

I was diagnosed with PMR in May and Dr started me on 20 mg of prednisone thinking I would have an immediate cessation of painful symptoms. When that didn’t happen she upped dose to 30 mg and pain was gone. We then began a very slow taper. I am now taking 8mg and tapering 1mg per month. Sometimes it may take a larger dose of prednisone to relieve the symptoms (everyone is different). I agree about taking too much Tylenol. It is not good for your liver. Of course I don’t want to be on prednisone forever but, so far, the slow steady taper seems to be working. Be patient and good luck. Liz Ward

I was on higher dose of Predisone but with not much improvement. My Rheumatologist thinks I should have had some response after 3 mos and is concerned about long-term use of steroids at that dose. I am worried about tapering off, but if I'm not getting the results that many on this forum have experienced from Predisone then perhaps an alternative medicine is in my future.
Has anyone here had a spontaneous remission without the use of therapeutic drugs?