Can sed rate and c reactive results be normal while taking Prednisone?

Posted by joycecawthon @joycecawthon, Aug 12 7:03am

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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Profile picture for ceedub @ceedub

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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@ceedub
Sorry you're going through the uncertainty too. I think I've had (or still do but not troublesome at the moment), the Otitis externa. In regards to being on Prednisone and having CRP and ESR normal. I'm newly diagnosed PMR 7/31/26. Had Ultrasound next business day to confirm and check for GCA. PMR confirmed GCA negative at this time.
Did you have an ultrasound to be sure about GCA? If you're concerned for any other reason than just the Otitis thing you might want to ask.
My CRP and ESR last Friday (8/14) were down to normal range after taking Prednisone since 7/31. Started at 15mg, raised to 20mg 8/5, then 25mg 8/15 due to incomplete symptoms and pain relief on left shoulder arm hand and upper back. I hope that helps in some way. I know the ear pain can come and go and be kind of sharp, but I gave up on the drops because I could never get enough in the right spot or lay there for 5 mins. It only bothers me every so many years as long as I don't poke it too hard with a q-tip....lol
But seriously, if concerned re GCA for any other reason, ask for ultrasound for it. Blessings.

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When I first saw my PCP when PMR hit (like a truck) she strongly suspected PMR and ordered blood tests for sed/crp and prescribed prednisone. But she asked me to wait to start the prednisone until after the blood was drawn because the pred would alter the sed/crp results and mask them if they suggested PMR. I followers her instructions and both sed/crp came back high. Both have been squarely in normal/non detect since starting prednisone, but the PMR journey and inflammation pain eeking in with every taper tell the true story. Prednisone is both friend and enemy. It makes the PMR pain manageable while systematically eroding the health of multiple other bodily functions. I cannot wait to escape it.

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Profile picture for miluna @miluna

My sed rate and crp have been normal for a while but I feel terrible from tapering the prednisone! I say the prednisone has become my enemy! I took prednisone for years for chronic hives and asthma but never long term! I never realized how difficult tapering off prednisone could be! The withdrawals are so awful! I don’t know what my body feels like to be normal!

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@miluna I'm on my second taper for GCA after a flare a few months ago. I'm at 6 mgs and yesterday I could barely function. I have good days and bad days, yesterday was the worst. My bloodwork is overall stable except for the usual high white blood cells and absolute neutrophils, CRP and ESR normal. I know how you're feeling and I'm sorry. I never imagined this for my retirement having been healthy my whole life. We will get through this, takes a lot of patience I know but there is a light at the end of the tunnel. Wishing you well.

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Profile picture for kobellava @kobellava

@miluna I'm on my second taper for GCA after a flare a few months ago. I'm at 6 mgs and yesterday I could barely function. I have good days and bad days, yesterday was the worst. My bloodwork is overall stable except for the usual high white blood cells and absolute neutrophils, CRP and ESR normal. I know how you're feeling and I'm sorry. I never imagined this for my retirement having been healthy my whole life. We will get through this, takes a lot of patience I know but there is a light at the end of the tunnel. Wishing you well.

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@kobellava Hi, I’m sorry to hear about your struggles with GCA tapering. Your comment about being healthy all your life and never expecting retirement to be like this, struck a cord with me. l feel the exact same way! I have always been strong and healthy too. Seven months into retirement I received the unwelcome gift of PMR.
With my tapering, I struggled at the 6 mg point and bumped back up to 6.5. Then tapered down to 6 and then 5 . At 5 I had to go back up to 5.5. I’m finally back down to 5 mg and doing better than the first time around. From here forward I will never taper more than a half a milligram at a time despite what my rheumatologist would like. At this lower dose a 1 mg drop a month is too painful.

I hope you find the dose that makes things bearable. I’ve only dealt with PMR, so I don’t know what it’s like to have GCA. Truthfully I hope I don’t find out either. I have put off any major travel plans until I feel I have a better grip on this.
May a pain-free retirement be in your future soon. Best of health always.

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Profile picture for franklinlala @franklinlala

@kobellava Hi, I’m sorry to hear about your struggles with GCA tapering. Your comment about being healthy all your life and never expecting retirement to be like this, struck a cord with me. l feel the exact same way! I have always been strong and healthy too. Seven months into retirement I received the unwelcome gift of PMR.
With my tapering, I struggled at the 6 mg point and bumped back up to 6.5. Then tapered down to 6 and then 5 . At 5 I had to go back up to 5.5. I’m finally back down to 5 mg and doing better than the first time around. From here forward I will never taper more than a half a milligram at a time despite what my rheumatologist would like. At this lower dose a 1 mg drop a month is too painful.

I hope you find the dose that makes things bearable. I’ve only dealt with PMR, so I don’t know what it’s like to have GCA. Truthfully I hope I don’t find out either. I have put off any major travel plans until I feel I have a better grip on this.
May a pain-free retirement be in your future soon. Best of health always.

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@franklinlala Thank you very much for your comments. I too have only dropped 1/2 mg. every 5-6 weeks although my rheumatologist suggested 1 mg. It was my opthamologist that sent me into a flare with a crazy taper of 7.5, 5, 7.5, 5 and when I got to 5 after a few days I had a flare and had to go up to 20 mgs. Very frustrating. I was at 6.5 for 5 weeks and dropped to 6. Was fine for a couple of days and then nothing but a struggle to even get out of bed. Slept most of the day today and it's now almost 4 in the morning. I've tried not to let this disease upend my life but there are many days that just aren't normal. My aunt who is 90 has PMR and has been on a maintenance dose of 4 mgs. for 20 years. My doctor has said that may be the case with me with GCA. I have to add she is doing well but has her days too. Her PMR never progressed to GCA and I pray yours doesn't either. We know our bodies better than doctors and I've come to the conclusion that the ones I see really don't know enough about GCA and it affects every one different. I know how painful PMR can be and I'm sorry. I do know we will get through these unexpected challenges. With GCA I know the chance of drug free remission isn't very high. If I can get to 4 mgs I will be okay with staying there. I'm happy for you that you are doing well at 5mgs. That's something to celebrate! Wishing you all the best and yes, best of health to you too!

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Profile picture for kobellava @kobellava

@franklinlala Thank you very much for your comments. I too have only dropped 1/2 mg. every 5-6 weeks although my rheumatologist suggested 1 mg. It was my opthamologist that sent me into a flare with a crazy taper of 7.5, 5, 7.5, 5 and when I got to 5 after a few days I had a flare and had to go up to 20 mgs. Very frustrating. I was at 6.5 for 5 weeks and dropped to 6. Was fine for a couple of days and then nothing but a struggle to even get out of bed. Slept most of the day today and it's now almost 4 in the morning. I've tried not to let this disease upend my life but there are many days that just aren't normal. My aunt who is 90 has PMR and has been on a maintenance dose of 4 mgs. for 20 years. My doctor has said that may be the case with me with GCA. I have to add she is doing well but has her days too. Her PMR never progressed to GCA and I pray yours doesn't either. We know our bodies better than doctors and I've come to the conclusion that the ones I see really don't know enough about GCA and it affects every one different. I know how painful PMR can be and I'm sorry. I do know we will get through these unexpected challenges. With GCA I know the chance of drug free remission isn't very high. If I can get to 4 mgs I will be okay with staying there. I'm happy for you that you are doing well at 5mgs. That's something to celebrate! Wishing you all the best and yes, best of health to you too!

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@kobellava You weren’t kidding when you said crazy ophthalmologist taper! I’ve never heard of one so extreme. I’m glad you saw your way through that, although it doesn’t sound like it was easy. Have you managed to maintain your eye health with GCA? I understand what you mean by not letting it upend your life. It’s easy to become hyper focused on your body and the pain. I find if I keep myself busy, socially, it is a great distraction.
I’ve learned so much from your comments. I did not know that a drug-free remission was not possible with GCA. It must be somewhat comforting to know your aunt has reached 90 years old on a maintenance dose of 4 mg. That impressive! It’s nice you have her to talk with about this. I have one friend who’s already been down the PMR road. She was able to taper off after about 17 months. It’s been about four months and I think she is starting to have some problems again. She’s a very positive person so she doesn’t like to let on when she’s not doing well. I was grateful to her when I first receive my diagnosis as she was a wealth of information.
I can relate when you talk about fatigue, sleep, and being up at 4 AM. That is probably one of my hardest things to manage is the constant fatigue. It’s hard to want to get up and move when you’re constantly tired. Sleep becomes erratic and can be hard to get on a schedule when you feel the need to nap, but then you’re up before the sun.
Thank you for sharing your story. I truly hope that you are able to achieve a drug-free remission one day. I think we can agree everybody’s different with how they come through this illness. Like you said, we will get to the other side of this journey eventually. I wish you better days ahead. Slow and steady, we will get there!

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Profile picture for franklinlala @franklinlala

@kobellava You weren’t kidding when you said crazy ophthalmologist taper! I’ve never heard of one so extreme. I’m glad you saw your way through that, although it doesn’t sound like it was easy. Have you managed to maintain your eye health with GCA? I understand what you mean by not letting it upend your life. It’s easy to become hyper focused on your body and the pain. I find if I keep myself busy, socially, it is a great distraction.
I’ve learned so much from your comments. I did not know that a drug-free remission was not possible with GCA. It must be somewhat comforting to know your aunt has reached 90 years old on a maintenance dose of 4 mg. That impressive! It’s nice you have her to talk with about this. I have one friend who’s already been down the PMR road. She was able to taper off after about 17 months. It’s been about four months and I think she is starting to have some problems again. She’s a very positive person so she doesn’t like to let on when she’s not doing well. I was grateful to her when I first receive my diagnosis as she was a wealth of information.
I can relate when you talk about fatigue, sleep, and being up at 4 AM. That is probably one of my hardest things to manage is the constant fatigue. It’s hard to want to get up and move when you’re constantly tired. Sleep becomes erratic and can be hard to get on a schedule when you feel the need to nap, but then you’re up before the sun.
Thank you for sharing your story. I truly hope that you are able to achieve a drug-free remission one day. I think we can agree everybody’s different with how they come through this illness. Like you said, we will get to the other side of this journey eventually. I wish you better days ahead. Slow and steady, we will get there!

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@franklinlala I thank you for sharing your story too. I'm sorry about your friend having problems again. If she doesn't wait too long she may be okay with a low dose of Prednisone. It would be horrible to have to start all over again. When I was admitted to the hospital I was blind in my right eye and had blurred graphic type vision in left. Saw multiple blurred images. It was ready to go. They immediately put me on 1000 mgs IV of steroids. It happened quickly the night before and silly me thought it was stress related because we had just put my sister-in-law in hospice, I had a stroke the month before which was completely reversed with that clot buster and I found out in my second stay it was actually the GCA that caused it. The opthamologist there when I had the stroke kept telling me something was off, he just couldn't figure it out. Well, the GCA symptoms were there but the brain doctor didn't know about GCA, The opthamologist was there when I showed up blind and immediately ordered the IV. He knew then what it was. It's rare to get your sight back once you lose it and I thank God for his grace and mercy all those who prayed for me and the opthamologist. I see fine but could still lose it on these low doses. People have but I don't dwell on it. I just spent the afternoon in the yard with my 91 year old mom, very healthy lady who worries about me but I told her there are others much worse off. We just don't have health issues in this family (my aunt is not blood related, her husband is my moms brother) and no one understands why I have GCA. I don't understand it either. I do wish there was something we could do about the fatigue. I haven't had a good night sleep in 1 1/2 years and naps to help with the fatigue, well aren't helping. I do keep myself busy, very busy but pace myself. I also want to say the opthamologist that diagnosed me and confirmed by temporal biopsy is the same guy that gave me that crazy taper after a year of me tapering. He's very smart with some things, not so smart with others but I respect him for all his efforts in saving my sight. He's much older and refuses to retire. Good man. We will definitely get to the other side of this, takes patience. Wishing you well and saying a prayer you do well on 5 mgs.

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I’m reading everyone’s story about tapering with interest. I was diagnosed the beginning of this year with PMR, After having two cervical fusion surgeries last year that I believe contributed to my current condition.
I just saw my Rheumatologist, who reduced me from 8 mg to 6 mg daily. I’m not feeling that much better but he started me on Kevzara (just took my 3rd injection) and i’ve been taking methotrexate for a few months. I am recovering from a bilateral fracture of my sacrum; as I have osteopenia, he wants me off the prednisolone asap.
But the pain from the fracture and the PMR is so difficult to deal with.
I wonder if I should consult with another rheumatologist? My visit consisted of him telling me my bloodwork was fine.
Then he asks if I have any bad side effects from my Kevzara or methotrexate. Feels my hands and says to reduce my prednisolone.

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Profile picture for kobellava @kobellava

@franklinlala I thank you for sharing your story too. I'm sorry about your friend having problems again. If she doesn't wait too long she may be okay with a low dose of Prednisone. It would be horrible to have to start all over again. When I was admitted to the hospital I was blind in my right eye and had blurred graphic type vision in left. Saw multiple blurred images. It was ready to go. They immediately put me on 1000 mgs IV of steroids. It happened quickly the night before and silly me thought it was stress related because we had just put my sister-in-law in hospice, I had a stroke the month before which was completely reversed with that clot buster and I found out in my second stay it was actually the GCA that caused it. The opthamologist there when I had the stroke kept telling me something was off, he just couldn't figure it out. Well, the GCA symptoms were there but the brain doctor didn't know about GCA, The opthamologist was there when I showed up blind and immediately ordered the IV. He knew then what it was. It's rare to get your sight back once you lose it and I thank God for his grace and mercy all those who prayed for me and the opthamologist. I see fine but could still lose it on these low doses. People have but I don't dwell on it. I just spent the afternoon in the yard with my 91 year old mom, very healthy lady who worries about me but I told her there are others much worse off. We just don't have health issues in this family (my aunt is not blood related, her husband is my moms brother) and no one understands why I have GCA. I don't understand it either. I do wish there was something we could do about the fatigue. I haven't had a good night sleep in 1 1/2 years and naps to help with the fatigue, well aren't helping. I do keep myself busy, very busy but pace myself. I also want to say the opthamologist that diagnosed me and confirmed by temporal biopsy is the same guy that gave me that crazy taper after a year of me tapering. He's very smart with some things, not so smart with others but I respect him for all his efforts in saving my sight. He's much older and refuses to retire. Good man. We will definitely get to the other side of this, takes patience. Wishing you well and saying a prayer you do well on 5 mgs.

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@kobellava What a frightening and fascinating medical journey you’ve been on. I definitely think you have some angels looking out for you! I understand now about the possibility of needing a maintenance dose, your entire life. But what a blessing you were able to retain your vision! I pray it stays that way. I know we all want to get off prednisone, but in your case, it seems to be a necessary evil.
You mentioned a “brain” doctor not knowing about GCA. I’m assuming you meant a neurologist? I can’t fathom he did not know what GCA is! That’s a little scary.
Sometimes the outcome of our circumstances depends on who we happen to cross paths with. Thank heavens, your ophthalmologist is still practicing, and decided to put off retirement. You had the right person around you at the right time.
I was touched to hear about you spending time in the yard with your 91 year old mother, who still worries about you. I lost my mom two years ago at age 94. She worried enough for the both of us! Although I miss her, I’m glad I received this diagnosis after she passed. At that age the stress is not good for them.
And yes I can also relate to the question of why did I get this? I have asked myself that many times. I’d like to ask one more question if you don’t mind. Knowing there is a 15-20% chance of those with PMR to develop GCA, it’s 50% of those with GCA develop polymyalgic symptoms. Do you have body pain and stiffness as well? I hope you don’t as you seem to have enough to handle already.
Thank you for the kind words about my friend too. Take care…

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I don't know all the facts and I'm not a doctor but I am a patient with PM. R. And your rapid rate of reduction of the predisone is very unusual protocol. You may very well be in remission, and it's not unusual to have a normal SED and c r p and still have pmr. But you still need to taper slowly. Because it's your adrenal gland withdrawal symptoms that you're dealing with now. For example, I'm down to 3 mg now, but I was pretty much managed PMR symptoms when I was around ten milligrams. Remember, there's a difference between PMR symptoms and prednisone withdrawal symptoms. They 're similar. But different.

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