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what does the community consider a normal SED rate for GCA/PMR?
I'm so glad to find this support group!
Background: I'm a 82-year-old male. My GCA/PMR started in 2018, diagnosed in early 2019, and treated with prednisone and methotrexate. I was in remission from 2021 until 2024. However, my GCA/PMR flared up after COVID in spring 2024, and I'm currently on 8mg of prednisone.
My question: What does the community consider normal SED rates for GCA/PMR? My blood test by Quest calls normal < 20, while my Rehumy calls normal < 40. During the summer and fall of 2024, my symptoms indicated a flare-up with my SED at 20-35. When it went up to 42, Rehumy prescribed 20mg of prednisone, and my SED rate came down to < 10.
So, what does the community consider a normal SED rate for GCA/PMR? Thanks for any guidance you can provide.
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Thank you. I’ve had some similar, if vague, symptoms. I’m very apprehensive about the risk of GCA, so I reached out to my rheumatologist and had labs and US done. All is normal for now, thank goodness. I do appreciate your response, as the symptoms certainly vary from person to person and it is so helpful to hear of your experience with the condition.
You are welcome. Keep track of your symptoms and tell your rheumatologist if they get worse. And get an exam at an Ophthalmologist, letting them know you have PMR.
How about the il 6 test? I get that test about as often as sed rate and CRP.
Follow up to my previous question . I also have very low Cortisol. 5.2 so all my inflammatory markers are normal right now but my cortisol looks shot!
Other than an IL-6 level being interesting to know, I haven't had that level checked. I would think an IL-6 level would be useful prior to starting a biologic like Actemra or Kevzara for people newly diagnosed with PMR or GCA. After Prednisone is started, I don't think inflammation levels are very useful unless people think they are having a flare when they attempt to taper off prednisone.
Otherwise, maybe the pain source isn't an inflammatory process in the body; this can occur in conditions like fibromyalgia, where pain is present but inflammation markers remain normal.
I personally think inflammation markers can be normal and you can still have PMR/GCA. However, not every doctor believes this.
A cortisol level of 5.2 mcg/dL may be low, depending on the time of day and other factors. Cortisol levels vary throughout the day, so the time of day when a blood sample is taken is important.
I was scheduled for IL-6 test when I was first diagnosed with PMR. They requested IL-2 and IL-6. Medicare would not cover the IL-6. I dont remember the cost but it was expensive. I already knew I had PMR so I did not pursue it. I have seen on here other messages if someone has ever had the test and I have not seen one. I do not believe its an easy test to perform.
I would add the newer biologics work on the IL-6 receptor. Studies have found that to be elevated during PMR. So obviously it is a test that may become more available as they develop newer drugs.
Yes, Inflammation markers can be normal (as with me) and you can still have PMR. My internist and rheumatologist both indicated as such and I am in that smaller category. A year ago I started prednisone and tapered to 10mg over 10 months with some minor difficulties. I had bad flares with any dose below. Nov I started Kevzara and am now down to 4mg. I’m hopeful to get off Prednisone in the next few months. All along my markers were normal with one exception That occurred when I was in a bad flare.