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

Hi there- Congrats on getting to 10 mg prednisone. But it can be disappointing to have a flare—between the pain and the uncertainty of it, it’s tough.

It sounds like you’re having a similar experience to my father. He also had to go up to 30 mg. For what it’s worth, it seems common when trying to get to 10 mg and below for things to get a little sticky.

To answer your question, it can be hard to know. It could be a “mini flare,” as you say—it might pass in a few days because other things could affect inflammation. If your pain increase is minimal and you’re comfortable waiting it out at least two to three days to see if you get back to baseline, that seems reasonable.

But my PT’s guidelines are that if my pain level goes up by 2-3 points and remains elevated for 2 or more days, it’s probably time to intervene.

Even without that guideline, if you get to be in a lot of pain and much more limited, usually it’s better to do a slight increase in prednisone, and then try again. It’s frustrating, but your body just might not be ready. For my family (father has PMR; I’m a caregiver), we decided it’s not worth giving up the quality of life and risking a potentially larger and more prolonged flare. But a lot of that depends on what you feel comfortable with and what you and your doctor decide. Glad you can check in with your rheumatologist, and hope you feel better soon!

Thank you for your input. The mini flare or whatever it was only lasted about 2 days. My rheumatologist said if pain increased to get my blood work done so we could reevaluate prednisone dosage. Happily (for now) I am continuing with 10 mg and feeling fine. Fingers crossed. I am very lucky to live in an area where I have fairly quick access to my rheumatologist and blood work can be done in a day. Never imagined I would need this kind of specialist in my wheelhouse. The joys of living a long life! Liz Ward

That's great! Glad it resolved; must be such a relief 🙂 We've figured out that every time we drop my dad's prednisone dose, there seems to be an initial mini flare for about 2 days and if all goes well...things are ok. Hopefully it continues going smoothly. I know what you mean; I'm grateful we can relatively easily get to a lab too--they know us by sight now lol.

My initial pain was in my right hip then my left groin. It moved into my left hip, both thighs and both knees. I didn’t have arm and shoulder pain until 3-4 months into PMR. From my shoulders and arms it went to my neck and head and I ended up with a hearing loss in my left ear. This is a CRAZY ride and it keeps changing. I was diagnosed about one year ago.

Hi everyone. I am in my 5th year of pmr with many ups and downs. Have been down to a mg or two a couple times only to have a relapse of some sort. I recently went to 10 mg prednisone, now 8.5. My hands had swelled, very stiff and painful. Xrays revealed OA and arthropathy consistent with cppd. I agreed to try methotrexate, only took 2 doses and convinced myself mtx was a bad idea for me. In my 74 years I have had numerous medical issues and am worried mtx could trigger some complication. I am seeing an ENT for Meniere's? Vestibular migraine?,hearing loss, tinnits, cardiologist for HTN, pvst, retina specialist for amd?macular dystrophy? I have gone on a low fat, low sodium, no caffeine diet. I'm having a problem with the diastolic being too low, in the 40s. I have decreased my BP meds which has helped somewhat. I could write a book, really.
suzanne

Hi @pmrsuzie, Welcome to Connect. I'm sorry to hear that you have been dealing with PMR for 5 years. That is definitely the pits. My first time with PMR was 3 and half years and then six years later when my PMR came back, it lasted for 1 and half years. You mentioned low fat, low sodium, no caffeine diet. Here is some more diet related information that you might find helpful.

--- Diet and Supplements for Polymyalgia Rheumatica (PMR): https://www.arthritis-health.com/blog/diet-and-supplements-polymyalgia-rheumatica-pmr

What helped me reduce my time on prednisone the second time around with PMR was eating healthier, eliminating as much sugar as possible 🙂 and adding more moderate daily exercise. I also take blood pressure meds so pretty much have eliminated any added salt and try to avoid high sodium foods.

Some people that have struggled to taper off of prednisone have been successful using the following tapering plan found on the HealthUnlocked website.
--- Dead slow and nearly stop reduction plan (Tapering)
https://healthunlocked.com/pmrgcauk/posts/131189593/dead-slow-and-nearly-stop-reduction-plan

Do you keep a daily log of your pain levels and prednisone dosage?

John, thanks for your comments. I will read the links tonight. I have been following an anti-inflammatory diet as much as possible. And I do limit sugar. I read every label. I have found it necessary to pick and choose from all these diets. Some foods and ingredients are hard to find and too expensive. These diets are all different.

I was splitting my prednisone dose but found that less than 5 mg made tapering difficult. I was down to 1 mg when the hand inflammation started. I thought the pmr was gone. The inflammation just went somewhere else, not my hips and shoulders. This is the second time I had a hand problem, and it elevates my WBC count. The first time the pain was so bad I cried in the Dr office. I ended up in the ER and they did every imaginable test for an infection, could not find anything and gave me 60mg medrol in an IV. Sent me to a hematologist. Had a lot of bloodwork but no explanation, my hand got better.
It's s rollercoaster ride for sure.
suzanne

I keep a BP and med dosage records, not pain level. About diets. If something has too much fat or sugar or sodium to my liking, I modify the serving size, maybe have half a serving. I also follow the ' three bite rule' - anything I should not he eating, three bites is enough to at least satisfy the desire for something I crave but can only eat once in a blue moon.
suzanne

I am updating here, which might not be the right place! I’m not sure where to go when I just want to add a short note about my situation. A reminder: I have not been diagnosed officially yet. I saw my doctor on Tuesday, and she did much more in-depth bloodwork and is checking for Lyme disease and lupus and several viral levels. In the meantime, she agreed to a trial of prednisone since I have a rheumatology appointment scheduled for January 2, 2024. I have taken my third prednisone this morning, and the improvement is dramatic. Very minimal pain and stiffness, and my whole body feels looser, if that makes sense. I’m on 20 mg per day to start off, and the trial is for seven days. A note to others in this situation: if you have a rheumatology appointment that is too far off for comfort, as I do, be sure to call that office and get on their cancellation list. The appointment scheduler was quite encouraging when I called to do this. I’m hoping to get in early. Meanwhile I got my Sed rate back, and it has gone from 35 to 45. More helpful evidence. Many thanks to those of you who have offered advice and support at this early stage of my (probably) PMR journey. Best wishes to all of you!

Glad you’re feeling better and hopefully on the right track, and that you get a rheumatology appointment soon! That’s such a great point about getting on the cancellation/wait list. My father’s rheumatologist also had online scheduling, so I checked every few days, but you can’t always do that as a new appointment.

Sometimes I’ve also called the scheduler every few weeks because even if you’re on the list, there can be a gap between when something opens up and when they call you and I’ve been able to grab an opening that way.