ESR marker raising as I reduce prednisone

I have an autoimmune disease and Mayo doctors used a drug called Actemre to effectively replace prednisone. You might want to ask your doctor if Actemre is used for PMR. God bless your relief and recovery from PMR.

Hi @emer, I see that you have already connected with another new member @curtvapor. I would like to welcome you both to Connect. There are a couple of other discussions on the use of Actemra for treating PMR that you might find helpful.
--- Actemra (Tocilizumab) to treat PMR??: https://connect.mayoclinic.org/discussion/actemra-tocilizumab-to-treat-pmr/
--- How hard is it to get on Actemra (Tocilizumab) with PMR?: https://connect.mayoclinic.org/discussion/how-hard-is-it-to-get-on-actemra-tocilizumab-with-pmr/.

@emer, You mentioned you have been reducing prednisone slowly. Each of us are different when it comes to tapering off of prednisone. Here's some information I found on your question about ESR levels and prednisone.

"Monitoring CRP (or ESR) is often helpful when assessing a patient’s response to prednisone; levels generally decrease within a few days of treatment initiation and normalise within two to four weeks.8, 13 However, levels of inflammatory markers may not always correlate with the patient's symptomatic response. In addition, some patients may have elevated baseline levels; especially patients with obesity, where levels of inflammatory markers may never fall within the normal range which can make their use for monitoring difficult. A pre-diagnosis baseline CRP (or ESR) measurement is useful to compare in this situation if available. "
--- Polymyalgia rheumatica (PMR) – look before you leap: https://bpac.org.nz/2023/pmr.aspx

Are you able to discuss alternative treatments like Actemra suggested by @curtvapor with your rheumatologist to see if that might be an option for you?

Actemra is prescribed for Giant Cell Arteritis (GCA) patients.

Kevzara was just newly developed and is authorized for Polymyalgia Rheumatica (PMR) patients.

Both medications are biologics and are considered steroid sparing medications.

My doctor recommended the usual: eating well, sleeping well, and exercising. As soon as I have my surgeries I'm going to start exercising (gall bladder removed and meniscus root tear repair) and see how much it helps. So I'm right there with you wanting to get off the Prednisone. At 15 mgs and Sedimentation Rate is probably over 40, since at 20 mgs it was at 32 with 40 being the threshold. Doctor told me not to go by the numbers, but by how I feel. Right now, life is good! Did anyone mention about taking Gabapentin for the pain? I've not experienced any side affects so far. I'm on that and feel pretty good at 900 mgs (1 - 300 mg capsule 3 times a day).

My experience in this PMR journey is that trying to tough it out with increased pain during a taper does not work. The pain just increases more. Also, ESR (sedimentation rate) numbers on that lab test vary greatly from person to person with this disease. In addition, different labs have different standards about what is called a high number. At the lab my doctor uses the upper limit for normal is 20. I had all the classic PMR symptoms and my ESR was 26, not high enough for my internist to feel comfortable prescribing prednisone. By the time I got to the rheumatologist it was 35 and I was in bad shape. On my last test, with very good pain control, ESR was 2. Previously I went along with the doctor's taper plan and the pain was getting severe. I asked for an ESR test and it was 17, considered "normal", but I'm quite sure it would have continued to go up if the doctor hadn't increased my prednisone. What has worked for me is having methotrexate added to the prednisone. Pain was decreased significantly and I was able to get the prednisone down to 5 mg. I am reasonably confident I can go lower which will probably happen at my next MD appt.

Thank you so much for taking the time to reply to me with these nuggets of information and I will look into this before my next visit to my Doctor. On obesity, I don't think it's a factor as when I was diagnosed in January I was approx 133lbs and am 169cm in height. I will definitely discuss the Actemra with my Doctor. Thank you again.

Thank you so much, I will definitely discuss this with my Doctor.