Can sed rate and c reactive results be normal while taking Prednisone?
My rheumatologist is questioning whether I have PMR or something else because after 3 months on 20 mg of Prednisone both my sed rate and c reactive results are normal. He tapered me from 15 mg to 5 mg in 20 days (I was crying in pain) testing every 5 days, but my sed rate and c reactive results showed normal in every test. Could I have something other than PMR? My whole body hurts, but as the day progresses my legs feel like they have elephantitis (but they're not swollen). The Dr has run tons of other tests, we can't figure this out. I'm 75 and really fit, still trying to work out regularly. I don't like Prednisone!
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Sorry to hear about your plight. Difficult situation. The short answer to your question is that about 5% of people have normal ESR and CRP at diagnosis, and in many people the ESR and CRP return to normal during treatment. There is no specific test that proves the diagnosis. Tests are done to check for the possibility of alternative diagnoses. That being said, if one has typical symptoms, rapid relief (usually within hours) with low to moderate dose prednisone or prednisolone (approximately 15 to 25 mg once a day, best taken early in the AM), then the diagnosis of PMR is highly probable. Tapering off the prednisone is usually recommended to be slowly accomplished over about 12 months or so, and flaring of symptoms during this process is common.
So, in the context of your situation, if the diagnosis of PMR is correct, then tapering of the prednisone as rapidly as was done in your case would be expected to result in rapid recurrence of symptoms.
Did the initial treatment with 20 mg of prednisone relieve your symptoms?
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4 ReactionsPMR is like a one-headed fire breathing dragon that needs to be tamed. Prednisone is a great medication to put out the flame of the PMR dragon. The inflammation that PMR causes is generally not detectable when we take prednisone but the dragon doesn't go away quietly. It grows another head while we take prednisone. You could label the second head of the dragon "adrenal insufficiency'' which might be more vicious that the first head of the dragon.
When we think the dragon is in remission we lower our defenses and reduce our prednisone dose. This gives the dragon a chance to revive itself with two heads. We wind up with PMR and adrenal insufficiency. The two-headed dragon is worse than the one-headed dragon and much harder to overcome.
https://www.everydayhealth.com/rheumatic-conditions/tapering-off-steroids-when-you-have-polymyalgia-rheumatica/
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Part of the difficulty of overcoming adrenal insufficiency plus PMR is because our body is already suppressed from overcoming PMR the first time. Prednisone replaces much of the cortisol in our bodies and leaves us defenseless unless we take more prednisone for a longer time.
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1 ReactionSed rate and CRP can be in normal range when on prednisone.
Rapid taper can result in painful flare up. The ESR and CRP don’t always correlate with our symptoms,
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@mark2471 yes, when I was at 20 mg of Prednisone I was great!
Related yet unrelated: GCA while on Actemra infusions/Tyenne injections and reliability of CRP and SED Rate. My neuro-ophthalmologist told me that these biologics all but negate reliability of standard inflammation markers and I would have to rely solely on (returning) symptoms to recognize a GCA flare. I mentioned this to my rheumatologist and she vehemently disagreed. Anyone want to wade in on this?
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1 ReactionThe taper (from 15 to 5 mg in 20 days) you describe is absurdly fast. But maybe he (your dr) was just seeing if you had a response to prednisone in both directions (to stop pain and the see if you could come off it. No matter the case, if one has been on prednisone for over two weeks a slow taper off the high doses is recommended due to the possibility if adrenal insufficiency responses. My primary care dr and I did a blast of 20 mg, then dropping by 5 mg every three days or so. This was a 2 week experiment. That was similar to you but that was at the beginning my PMR symptoms and an experiment. And, I had not been on it for 3 months. Of course, in hind sight, it did not work nor would it if I had PMR but I think that was the point of trying a "blast" treatment. I think it is worth trying as such to see if it breaks the cycle of pain but if it is true PMR it will come back with a vengeance as you have described.
As for your CRP and ESR values.....As stated in some of the posts, a small percentage of people with PMR do not have elevated inflammatory markers. It makes it more difficult to diagnose given this . And when on prednisone ( decent enough dose to reduce pain or stop pain) one should have normal ESR and CRP numbers, is my understanding.
As for the pain being "something else". I guess it could be but you need more than a guess. The dr. can do other blood tests such as a Rheumatic Factor test and an ANA test which looks at the possibility of other autoimmune diseases such as lupus and RA (rheumatoid arthritis). The doctor and you need to start ruling out other diseases. Another, is a blood test to rule out Polymyositis. This is like PMR but a marker in a blood test can help decipher that vs PMR. It is very similar but is an actual muscle-involved rheumatic disease.
So sorry to hear that you are experiencing pain like this. It really sucks. I know how startling it is to one's mind as well. One can be working out and recreating one day and within a week not able to dress oneself from the pain and stiffness. That is what happened to me. And then that panic begets more pain and stiffness. Keep after it and be your own best advocate (a doberman dog comes to mind!). Good luck.
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1 Reaction@ceedub I too would like to know this. I have GCA and am on Actemera and my labs look good but I still have symptoms. Pressure headache and ears hurt inside. I’m tapering prednisone and am on 9 mg. Tapering 1 mg every 3 weeks until I hit 7. I stopped the methotrexate after the 3rd infusion.
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1 ReactionSorry to hear about all the pain and your legs. I'm new to PMR but read a lot about it. Did your Rheum order an Ultrasound to confirm PMR? They look at your shoulders and may look at other joints depending on your symptoms. Also the rate at which he tapered your dose sounds far too fast. Everything I've read says go slowly, small increments at a time (each week or more depending on how long you've been on it). Prednisone seems to me to be an incredibly powerful medication and affects our bodies in many ways. Ask him about an Ultrasound before he dismisses your PMR due to CRP and ESR values. I pray you get relief quickly.
I was on 20mg Prednisone and developed a rather odd pain in right ear @ end of July. Prednisone was upped to 40mg. Went to primary doc last week who said I had Otitis Externa, AKA swimmer's ear (only time water could get in my ear is when I wash my hair...whatever). She prescribed drops (antibiotic + steroid...like I needed more!). Drops did not help, in fact they might have made pain worse. At "routine" appointment with rheumatologist this week, she said it was unlikely ear pain was GCA-related but wanted labs done to be sure. CRP and SED were normal. This uncertainty makes me nuts!
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1 Reaction@ceedub
I think ESR and CRP might be “less reliable” on Actemra but inflammation markers are never completely reliable.
My rheumatologist routinely checks my inflammation markers while I do monthly infusions or Actemra. Once we extended the time between infusions. At seven weeks between infusions my ESR and CRP showed an increase but I denied any change in my symptoms. My rheumatologist relied more on the increase in my inflammation markers than my symptoms. It was decided that I should not go longer than six weeks between infusions.
I think inflammation markers while on Actemra might be more useful if Actemra wasn’t working for some reason. In my example the increase in my inflammation markers was attributed to too long of a time between infusions.
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