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PMR and tapering -- will blood work change?
Polymyalgia Rheumatica (PMR) | Last Active: Jul 6, 2021 | Replies (29)Comment receiving replies
Hi John,
I've been reading through some of these threads on PMR. I wish I had found this forum sooner! I wanted to share my experience and see if you have any advice for me. I was diagnosed with PMR in July 2017, after an acute onset. I'm 62, and I couldn't walk or sleep from pain (hip area, upper arms).
I started prednisone at 40 mg, because I had also had some headaches, and the doc had me biopsied for GCA (negative). The prednisone worked within hours. I quickly came down to 20 mg. I had trouble getting below that, and the doctor added methotrexate to the mix, after which I got down to 10 within a couple of months. Now, it has been 3 more years, and I'm hovering at 5 mgs, still with the methotrexate (injections, because I for some reasons didn't metabolize the oral form). My CRP has been extremely hard to reduce. It was in the 60s on diagnosis, and the lowest reading I've ever had was an 8. It has been gradually rising since that reading, and now stands at 18.
When I try to lower the prednisone, I get a bit achy, but not too bad. The main thing is that my CRP seems to rise. If I were weaning based on symptoms alone, I would probably be down to 2 or 3 mgs by now, or even lower. (Last spring, when Covid hit, my doc had me go off everything for some reason, and after 6 weeks I had a huge flare that put me in bed for a week, so I know I can't just go cold-turkey.)
My real question is: should I pay attention to the CRP, or should I just focus on symptoms and try to get off the prednisone anyway? I know you are not a doctor, but I want to know whether the numbers or the symptoms are the main guiding factor, in your opinion.
I should mention that I have two complicating health issues. One is that I am now obese (thank you, prednisone), which I know contributes to inflammation. And I have another mildly inflammatory illness (but which never put my CRP this high). It's possible the high CRP is something cumulative going on.
Thanks for any thoughts you can share!
Replies to "Hi John, I've been reading through some of these threads on PMR. I wish I had..."
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Hello @throughhiker, Welcome to Connect. Sorry to hear you are struggling to lower the prednisone dosage but you are not alone. I think most of us with PMR have experienced what you are going through. I have no medical training or background but mostly I listened to my body when tapering down on prednisone. I kept a daily pain and dosage log and wrote down how my pain was on a scale of 1 to 10 and usually didn't taper to the next lower level if my pain was 3 or more. My 1 to 2 is I think what you might consider achy but it's something we have to decide for ourselves since pain is a little different for each of us. You might want to experiment by trying to taper by 1/2 mg of prednisone to see if it helps, or something that some members have mentioned is taking 1/2 of your dosage in the morning and 1/2 at bedtime. I never tried the second way.
I know weight can play a big part in making aches and pains worse since your body has more to carry around. I had the extreme weight gain (40+ pounds) the first round with PMR so the second time around when it came out of remission I made a few lifestyle changes that helped me limit the gain to around 5 pounds. I started eating healthier, made sure to do some kind of exercise daily (nothing extreme). What really got me thinking about nutrition to help with PMR was reading Dr. Terry Wahls story about her battle with MS and how she went from a wheel chair to riding a bike again by changing what she ate and focusing what helps the body on a cellular nutrition level - https://terrywahls.com/about/about-terry-wahls/. I still struggle with weight a little but I found some more help with my diet using alternate fasting. There is another group with discussions you might find helpful for the weight problem here - LCHF Living & Intermittent Fasting - https://connect.mayoclinic.org/group/lchf-living-intermittent-fasting/
Here's some information you may find helpful -- Diet and Lifestyle Changes That Can Aid in the Treatment of Polymyalgia Rheumatica: https://arthritissj.com/diet-and-lifestyle-changes-that-can-aid-in-the-treatment-of-polymyalgia-rheumatica/
You mentioned that you were diagnosed in 2017 by your doctor. Have you ever been seen by a rheumatologist?