PMR Dosages and Managing Symptoms

these are such good questions and a dilemma for all of us..everything you say is accurate..all i can say is be prepared to be on prednisone for an extended period and taper as often as you can

I would dearly love to hear what your second opinion doctor has to say about this subject. I keep reading here on this site, and what I"m coming up with, is everyone is being told something different by their doctors. It seems it's basically up to us what we're prepared to deal with. The only thing everyone seems to agree with is, the less prednisone, the better! But some of us are taking less and dealing with some pain. Others it seems aren't having any pain, and my question is, are they taking the least they can be taking? And how much pain is too much? Because I'm having pain, and still my doctor is urging me to taper down to the next from 7 to 6 mg. Very confusing!!

thank you for your message. It is good to know that others have the same question. And you bring up a good point - why is that?. Why are the doctors not making it clear?. I guess as we deal with this longer we learn more and just need to ask the right questions. all your questions are spot on!

From my experience this is the bazaar disease that is insanely tricky to manage. For me, drugs, diet, exercise, mental/emotional stamina and probably environmental factors have to be in synch to live a robust existence with PMR. The inconsistency drives me crazy.

Thankfully these blogs have provided great guidance and I have an amazing rheumatologist who coaches me to listen to my body. She’s empathetic and is always willing to recommend alternative therapies.

Thanks to all the contributors. After a year and a half with PMR, and now stuck around 4mg, you give me hope on a regular basis.

… feeling down at the moment and just needed to vent.

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.

Hi Everyone, I have started reading your posts and feel so much better to know that what I'm experiencing in terms of ups and downs with PMR and prednisone are not unusual I was diagnosed in June and started taking prednisone in Sept. My doctor started me slow and ramped up in hopes that I wouldn't need 15 or higher mg. I ended up on 15 before the holidays and 20mg after. I ramped down from 20mg to 15mg 2 weeks ago and started have a flare up. It's better but not gone. I'm trying to decide if I should ramp up to 16 for a couple of weeks. Any advice? BTW...20mg caused me a number of problems and didn't really improve my situation much. I've never been on a blog before. I agree that just venting helps!

@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?

Welcome June @juneh, You are not alone. I think all of us with PMR have had our ups and downs with flare ups, especially when we are first diagnosed. What helped me a lot with my first occurrence of PMR was keeping a daily log of how I felt (pain from 1 to 10, with 10 the worst) and what dose I was taking that day. Then if it was the day I planned to taper down, if I was at a 1 or 2 and not feeling too bad, I would go to the next lower dose.

Do you keep a daily log of how much pain you feel (scale of 1 to 10) and your current dose of prednisone?

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?

Hi John...Thanks so much for your reply and encouragement! Yes, I keep a daily log of my dosage, pain from 1-10, location of pain, and vital signs. It's been very helpful in tracking the ups and downs. So, it sounds like you judge yourself about tapering up or down. That's what I'm feeling at this point if it's just a mg up or down. I like my doctor a lot and have a game plan, but sometimes it seems a little tweak one way or another might be all I need. Thanks again!