Can PMR come on more gradually?

This is exactly why we take the prednisone. Well, and to lower the pain of course.

I feel you about no prednisone because of existing eye conditions. I haven’t been officially diagnosed with PMR because like you my rheumatologist isnt playing along. And going to another is not an Option because he is the only one in my area. So, what I’ve done successfully to help my symptoms, is eat a AIP diet. Very restrictive but really simple to follow. Meat, vegetables (except nightshade) and fruit. I also take supplements for osteoporosis that maybe helping PMR…good luck to you on your journey.

If you have difficulty accessing an experienced rheumatologist don’t give up.
A good general internist or your primary could fill the gap. The inflammatory
lab markers can vary and don’t always make the diagnosis. It may help to revisit your primary and ask if they might consider testing you with an HS-CRP,a bit more sensitive. A therapeutic trial of 15 mg prednisone for 14 days
could present some evidence of your pathology if there are no contraindications.
I have seen improvement in my symptoms with the Mediterranean low gluten
dietary routine which is less restricted if you can be consistent. Doctors can
gaslight us unintentionally if they are “too busy” or mindset bound. If all else
fails travel to a medical center.In our seventies we deserve the best health span and ability to enjoy retirement.

I would like to weigh in about PMR coming on gradually. My symptoms began in Jan. 2023 with sore hip flexors. I thought it was too much exercising and figured it would go away. It didn’t, but stayed the same for another couple of months. I was able to pretty much do my normal activities. We took a long trip out of the country in April and then I noticed great difficulty getting on and off the tour bus. By the time we returned home my hip pain had increased. I went to two orthopedic dr. who said it was osteoarthritis and they sent me to PT. Pain was getting worse, PT didn’t help and then my PT referred me to a rheumatologist. At that point I couldn’t get out of bed by myself, walking was a shuffle and getting up from a sitting position was very painful. Pain was bilateral in hips, lower back, across shoulder blades and in my neck. PMR was diagnosed and I am now on prednisone and tapering. So yes, PMR can be a gradual decline. The prednisone seemed like a miracle drug even though I know that it is not always a long term solution because of side effects. How to mitigate side effects: diet(anti inflammatory), exercise (not too strenuous), supplements (calcium, vit D, vit K, Pepcid). I have blood work every month and see my rheumatologist once a month. I too had trouble getting that first appointment. I asked to be put on a cancellation list and miraculously was able to see the dr. very quickly. I wish you well on this journey. PMR has takes up way too much space in my brain but if I can be of help to anyone who is suffering with this condition I feel better. Carpe Diem

I'm a 70 y/o Psychologist who because of a lifetime of OA, learned to live with chronic pain. I thought I had it all settled. 8 months ago I start non productive sneezing, serial, every morning. I winter in FL and thought when I got there the sneezing would stop. I progressed to a viral outbreak that went through my system. It ended with PMR like pain and inability to move. I had the same experience you described with a lack of Markers. I've been on steroids 15 down to 1. I have increased pain (terrible) and still don't have a DX. Going to new Docs NOW---again,

We’re all rooting for you. I know what you mean about turning to the forums… It’s funny because some doctor folks get annoyed with internet research >_< I’d disagree, as long as we research and share information wisely.

My father’s PCP’s team also didn’t believe us when we brought our concerns to them—it took multiple phone calls, and their MD on call in immediate care refused to see us even after we had lab results strongly suspicious of PMR.

I have a theory that PMR gets missed because it often affects older people with other pre-existing conditions and either we can try to explain it away, or the healthcare providers can. It’s frustrating to me.

We’ll never know if not treating the PMR quickly enough was the reason, but within 2 weeks of getting diagnosed (but weeks after having symptoms), he had a stroke. He was never screened for GCA (which can cause a stroke). His PCP prescribed a lower dose of prednisone after my mom left 3 phone messages and the aforementioned visit to their urgent care. They didn’t even give us a referral to a rheumatologist and presumably didn’t attempt to consult with one at least for short term feedback.

Glad you’re finding help here and wishing you all the best.

Hi @becky72, I had severe fatigue after the onset of symptoms. I could manage a walk, but after that just sat around for the rest of the day, doing only what was necessary. Bloodwork showed I had anemia related to the PMR and GCA I was later diagnosed with. It is called anemia of chronic inflammation. Do you know if you're anemic?

I had the same experience of it coming on gradually until a more severe attack. Now looking back the pain pattern was classic. Three doctors missed this. Finally a new primary care dr (because I had moved to a new city) caught it.

Me too, one shoulder started feeling inflammatory months before, then I tore a hamstring which took a month to get better, then suddenly the inner hips had me crouching to even walk. I was playing an excessive amount of pickleball and blamed it on that, I truly thought I needed an orthopedist and was thinking I suddenly had severe osteoarthritis and needed a double hip replacement. Never a twinge from either hip in my life, age 71.
It dawned on me that this was PMR when BOTH shoulders and hips suddenly hurt equally. I couldn't get out of bed. I started 20mg myself, no doctor, tho my husband is an internist and we always have lots of steroids on hand at home.
Meanwhile no rheum in our area will take PMR patients, they expect primary care docs to deal with it. Medicare pays nothing and there are a lot of us with PMR. Patients end up managing their own tapers anyway and it can go on for years.

I completely agree about patients needing to manage on their own… I just end up feeling like a football being tossed between a rheumatologist, PCP and other specialists. Everyone shrugs and says, “Not it.”

I have fibromyalgia, and it’s like that—my rheumatologist (who treats me for a different condition) told me she’s able to be “selective” and doesn’t treat fibromyalgia, which is typically treated by a PCP (???) My dad is the one with PMR.

Thankfully, we did find a rheumatologist who treats PMR and she’s very nice. But most of the decisions and interpretation fall on us.

After seeing him go through all his health conditions (he had a stroke last year 2 weeks after diagnosis of PMR), I’m convinced he would have died if not for my mom’s and my experience knowing we’d have to advocate for him in the medical system. She’s a retired RN and I’m used to being dismissed from having chronic pain conditions. Still, I didn’t realize it would he so hard to get help, get coverage, and get providers to listen. I wished I would have been able to prescribe what he needs!