PMR Dosages and Managing Symptoms

Hi, John. Thanks for your reply. I haven't been keeping a log thru 8 mg (beginning at 15mg)because I wasn't having any pain at all. But when I started the 7 mg. and started having pain, I am now keeping a log as you had described yours recently, and that's what I modeled it on. This issue seems so basic to this disease, one would think it's a no brainer to a rheumatologist. Yet from the conversation on this site, it's anything BUT basic. I've had 3 conversations in 13 days with my rheumy. Each time he'd tell me to stay a few (4-5) more days at 7mg because I had pain, and then start tapering. All of his answers were similar. Never addressing whether or not I had pain. The 3rd conversation, I e-mailed him and I TOLD HIM I was going up to 8mg to see if it would help because now I've progressed to muscle spasms in my butt. He answered back stay on it 4 days, then go back to 7mg for 4 days, and then start tapering again. Again never addressing whether I had pain at that point or not. I'm losing confidence in this doctor. Do I start looking for someone else?

@aspine, I kept a daily log with the pain I was having in the morning along with that days dosage of prednisone so that I could discuss it with my rheumatologist. I used a pain scale of 1 to 10 with 10 being can't take it anymore and 1 or 2 is just a mild ache or stiffness and something that was OK with me. I did not taper down to the next level if the pain for me was above 2 and my rheumatologist was OK with the tapering taking longer. Also, if my pain was a 3 or 4 and above, I either went back to the previous dose of prednisone or split the difference by only bumping it up half of the previous dosage decrease. For example if I went from 7 mg down to 5 mg and the pain was bad the next day (for me a 3. 4 or above), I would increase the dose to 6 mg instead of going back to 7 mg to see if I could still taper just at a lower dose.

If it were me, I might try discussing the theory behind tapering off of prednisone with my rheumatologist and ask some pretty pointed questions like isn't the purpose of the prednisone to provide relief from the pain symptoms? ie...I take 20 mg and I feel great, but if I suddenly drop to 15, my pain level increases significantly and it's hard for me to function, etc. Here's some really good tips on planning a conversation with your doctor -- https://patientrevolution.org/visit-tools

I would also emphasize no two people are alike with their pain threshholds for PMR. There is a really good chart that you kind of have to read between the lines on tapering but when I look it, I see there's no timeline for tapering off of prednisone. There's only the goal to do it as soon as you can based on your symptoms.

Here's the article that the chart was pulled from under the Specific Recommendations Figure 1 -- 2015 Recommendations for the management of polymyalgia rheumatica: a European League Against Rheumatism/American College of Rheumatology collaborative initiative: https://ard.bmj.com/content/74/10/1799

Do you keep a daily log with your pain and dose?

I think what makes diagnosis hard sometimes is that there are a lot of conditions that mimic PMR. Maybe the doctor doesn't think it's PMR? I think if I lost confidence in my rheumatologist I would probably try and get a second opinion.

Diseases that mimic polymyalgia rheumatica (PMR): https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica

Yeah, I was kinda wondering about this myself. Now my dilemma is wondering who to go to, as I already left my PCP in the dust in re the PMR. Maybe I will talk to her anyway, and see what or who she suggests. Thank you John

John, I could really use your advise about now. I'm losing confidence in my new (and first) rheumatologist. From everything I'm seeing here, and reading "there", his ideas on tapering don't seem right. Everything is based on this many days or that many days, with no addressing the pain or even level of pain. Which is bearable. But should I be going down on the pred, if I'm feeling pain at the current level? And doesn't want to see me for 6 weeks, even though we've discussed this "hump" 3 times now.

Find a new rheumatologist for sure! I had an experience similar to yours and in hindsight I wish I had bailed earlier! My first rheumatologist was like a bad mechanic throwing large doses of prednisone at me while my current rheumatologist is fantastic helping me navigate the nuances of PMR.

I have an appointment with my PCP on MOnday, and I"m hoping she can either suggest a different rheumatologist, or convince me to stay put for awhile. It amazes me - I had never heard of PMR until I was diagnosed with it. I've seen two doctors - my PCP and my rheumy regarding this disease I have, and both of them talk and act as though I should be an expert in this matter. No direction!! I've never seen anything like this. Thank you for your encouragement!

Hi, John. Thanks for your reply. I haven't been keeping a log thru 8 mg (beginning at 15mg)because I wasn't having any pain at all. But when I started the 7 mg. and started having pain, I am now keeping a log as you had described yours recently, and that's what I modeled it on. This issue seems so basic to this disease, one would think it's a no brainer to a rheumatologist. Yet from the conversation on this site, it's anything BUT basic. I've had 3 conversations in 13 days with my rheumy. Each time he'd tell me to stay a few (4-5) more days at 7mg because I had pain, and then start tapering. All of his answers were similar. Never addressing whether or not I had pain. The 3rd conversation, I e-mailed him and I TOLD HIM I was going up to 8mg to see if it would help because now I've progressed to muscle spasms in my butt. He answered back stay on it 4 days, then go back to 7mg for 4 days, and then start tapering again. Again never addressing whether I had pain at that point or not. I'm losing confidence in this doctor. Do I start looking for someone else?

I am wondering if anyone has experienced pain under their arms with PRM. I had a lot of pain under my arms in Nov and Dec. It went away when I went to 15mg and subsequently 20mg (about 5 weeks total). When I ramped down from 20 to 15, it started up again. It feels like my lymph nodes but there's no lumps. Has anyone else experienced pain in this area with PMR? Thank you!