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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My C-Reactive Protein has generally been low (although it hit 10 once). ESR, however, is another story. Since I was hit by PMR 3 years ago, it's been over 50. My last test a few weeks ago was 86. I do have Smoldering Myeloma so who really knows what is going on.
Without question the testing center should tell you what their definition of the normal range is and you should always go by that. I refer to it as the green zone. You can also google the question and Dr Google will tell you industry standard, but this makes some assumptions. I live in Dallas and have many Baylor Scott and White doctors and they can use one range whereas my Univ of Texas Southwestern doctors will use a slightly different range - all depends on the testing equipment.
My Rheumy will look at inflammation markers but treats based on symptoms, not test results.
C Reactive Protein Normal ranges - UTSW < = 5.0mg/L; Baylor < = 4.0 mg/L
Sed Rate UTSW 0-30 mm/Hr ; Baylor 0-20 mm/Hr
The definition of green zone totally depends on the testing site. Close to the numbers counts but how you are feeling counts more. Since most of us have no idea what we ran in the 5 years prior to the PMR/GCA Dx then we really do not know what our personal normal was.
My SED rate was in the 38-50 range the last pre Prednisone treatment test. For comparison. I had a blister on my toe that became severely infected, it was thought that I would lose the toe (I didn't.) My SED rate was over 100 with this toe infection. A note. I have been taking 3x5mg Prednisone for the last month. If I happen to forget a dose I feel very bad (flu like symptoms.)
Lots of variables need to be factored into the normal levels for ESR and CRP . Age, gender, race, obesity, general overall health, etc, etc, Yes…even exercise and stress can cause fluctuations in ESR and CRP.
Cortisol is a hormone that regulates inflammation. The HPA axis is the mechanism that controls our inflammatory responses to various things. Prednisone puts a wrench into what used to be a finely tuned mechanism by artificially suppressing our immune system.
An analogy is like taking a Boeing 747 out of autopilot and attempting to land the thing without any experience with flying a plane.
In any case, ESR and CRP are indirect measures of inflammation. They don’t aways reflect actual inflammation or what is causing the inflammation.
My ESP and CRP have been normal from the beginning, causing my internist to hold off prescribing prednisone. For three awful weeks, he was convinced I had RA or fibromyalgia.
Then put me on a fast taper until he was convinced of diagnosis. I understand he was being careful not to start a prednisone regime requiring a long taper but I had trouble convincing him. I told him I was quite sure, that I’d read all the other patients descriptions on Mayo Connect! He scoffed and seemed quite annoyed that I actually got info from another source other than him. He remarked in a visit report that “patient has been on the internet and thinks she has PMR”! Meanwhile he relented after a month and prescribed Pred but still said diagnosis was wrong. I carried on tapering and after 10 months I’m at 3/ 3.5 supplemented with 2- Tylenol arthritis 3x a day. He finally agrees with me and thinks I should be done by April. We’ll see…..
Thanks to you all for this great site. I appreciate all your insights. Xx
I agree with everything said about “normal”ESR stats, they don’t exist.
I was diagnosed with PMR in 2014 and started on 10mg of prednisone. While on the same dosage, I started developing symptoms of GCA and my ESR was only 29. I knew all the symptoms because I worked in Ophthalmology and saw patients who lost sight due to not realizing they were sick and did not get treated.
My PCP argued with me that I couldn’t have GCA because of my normal ESR, and because I was already on prednisone. After a few weeks I finally told him I didn’t want to go blind, so he sent me to a Rheumatologist. The Rheumatologist argued the same thing but consented to order a temporal artery biopsy. It came back positive! He now treats me for my symptoms and not the blood test results.
Please taper your Tylenol as well. I am allergic to aspirin and all NSAIDs (Non-Steroidal Anti-Inflammatory drugs) and used 3000mg Tylenol as my OTC pain management for several early years of my PMR journey. I am now sensitive to Tylenol and will get hives at 3000mg, yes hives, when I take that much for several days in a row. I can now only tolerate about 1000mg per day. My allergist says it is real and very rare, it happens, albeit rare. Now I take warm showers and a glass of wine some evenings.
Hi, anitallr. What symptoms for GCA were you having that were concerning? Were they severe? I’m actually having some improved joint pain but also having some transient and mild jaw pain that concerns me. Most of what I’ve read about GCA pain describes it as pretty severe.
Thank you for this advice. I will take it seriously and taper down the Tylenol. I recently have noticed ‘red cheeks’ but it never occurred to me why. I thought it was after the occasional glass of wine.
Great advice. Thx
Hello @leetaanderson
Yes, jaw pain and when chewing your jaw gets really tired. Also temple pain, scalp tenderness, fatigue and blurred or double vision.
I was having pain in my temples, but it was only mild at first. Later it felt like I was laying on a garden hose, it was a weird feeling but not very painful. What really bothered me was that every morning my top teeth felt like they were moved out of place, that hurt. Then a week later I also woke up and felt like someone had grabbed my tongue and pulled very hard, and I couldn’t open my mouth wide enough to eat my cereal that morning. At first I thought of Tetanus (lock jaw), but then it clicked —-temporal Arteritis /Giant Cell Arteritis.
I believe so many people have different symptoms but the doctors think you have to have all the classic symptoms and same with the blood test results.
That is why I had to push to have the temporal artery bypass done. And I was scared because , if left untreated, you can lose part to all of your vision. Some people regain some vision but a lot do not. I have been blessed that my vision is not affected.
I was started on 60mg of prednisone and then after 2 months on a fast taper, which did not work. I have been on a very slow taper and am down to 3mg a day now. I also had Actemera infusions but had to stop because of getting COVID twice in a short time period, and the flu, even with the vaccines, my immune system is depleted.