I need a confirmation that I can still have PMR even if I have normal ESR and CRP levels. My rheumy is confused and now wants to put me on meloxicam, but I don't think there's a need for that.
Specifically, I have never had elevated ESR, even before the pred when I went to the emergency room in my worst pain. At that time I did have high CRP. But that's the *only* time I had high CRP. Since prednisone it has always been normal. (But I never had a blood test when I was below 25 mg.)
My understanding is that it is still quite possible that I have PMR. It really is the only thing that makes sense to me. But here is what my rheumy just wrote to me:
"I am not sure what exactly to call this. It is not a myositis, as the MRI is quite sensitive. It is not PMR because you are quite symptomatic when your labs look good. (Although rarely PMR can present with normal inflammatory markers, you are quite young for a primary diagnosis of PMR . . . and I think calling this an atypical PMR from the vaccine is a bit of a cop-out.) . . . I would like you to continue to attempt to taper the prednisone but add a dose of meloxicam with your largest meal and see if you respond to the NSAID class as a steroid sparer."
After talking to everyone here, I really think I have PMR, and that my rheumy is confused because I reported pain while my labs were normal. But I just learned from all of you how to differentiate the various types of pain, and so my pain could very well have been DOMS, or temporary pain from the pred taper, or the hamstring tendon tears, or all of the above.
In other words, it is likely not some strange, unknown disease. I think it is more likely PMR with normal labs. Can someone please confirm this for me? I want to respond to my rheumy and I want as much knowledge and info I can get first.
And to clarify for all of you... about ten days after the vaccine my shoulders, neck, hips, and thighs hurt so much I could barely walk or turn over in bed. I had to lift my leg with my arms to put my socks and shoes on. I could not lift my right arm (vaccine injection side) more than 45 degrees. My left shoulder was also bad and hurt like hell when I tried to lift it. My neck pain was in the front of my neck mostly (never experienced anything like that before.) Building up to this, the pain was increasing daily, worse in the mornings, and accompanied by stiffness. The 40 mg prednisone took away all the pain. Then I met my rheumy a week later and she had me taper fast, until I had a major flare at 15 mg and immediately went back up to 30.
Doesn't all this sound like classic PMR?
I think she's confused I because of two things. First, I had mildly elevated CK levels twice, but other things could account for that (hamstring tears, for example, shown in my MRI). And second, she thinks that because my labs are normal while I am in pain must mean it is something else. But it might be the pred is simply working and my pain is DOMS or something else.
Ok I may be repeating myself. Please tell me what you think. <3
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As we know on here many don’t have raised markers and find it very difficult to get a diagnosis -which bus shy we siesta say symptoms are the key! ** sorry -should read “which is why we always say …” !
This is a fairly recent article which discusses non raised inflammatory markers -
are 3 more links to articles supporting normal blood markers not excluding PMR. But your rheumy does seem aware of that.
In fact, it seems to happen more in younger patients and I was a similar age to you when PMR first struck, not quite 52, and my CRP have never been raised but the ESR ran at 16-18 for 5 weeks during a massive flare when my personal normal is low single figures. 53 isn't that young - it is above the age quoted in all guidelines and a top PMR expert says she has quite a few patients in their 40s. It is possible to have normal markers in severe GCA affecting vision.
If you take meloxicam - NOT advised alongside pred whatever the manufacturers claim - and it doesn't work (it is unlikely to in PMR) she may accept it is PMR.
Prednisone is not a great drug and you wouldn't want to put your body through that repeatedly. Meloxicam isn't that "strong" or scary of a medicine. Not like Prednisone. It's an kinda in the same class as ibuprofen so don't take Aleve or Motrin with it. It should work better than those. Maybe a pain gel script could help.
I mean fine with my pain levels. I have no idea why my rheumy wants me to take any NSAID at all. I think my pain is mostly delayed onset muscle soreness (in my thighs, because I've been overdoing it lately gardening) and injuries/tears in my hamstring tendons (again from overdoing it while I was on a much lower dose of prednisone). They are minor pains.
YOU may not think that pred is not a great drug - it happens to be the only realistic option for most patients who have polymyalgia rheumatica as it is the mainstay of management of the symptoms the disorder creates. The alternative is longterm pain and disability and, for some patients who also develop GCA (giant cell arteritis) it is the only guarantee they won't irreversibly lose their sight.
I don't think I know anyone who has been able to manage PMR using pain gels. They don't even take the edge off ...
PMRpro... I've been 8 days now on 25 mg (up from 20 which was a disaster), and I have felt for 3 days now this achiness in my thighs. It's a different kind of pain than the more sever pain I felt at 20mg (including my shoulders and neck, which are fine now), and it didn't start until *after* I did bunch of gardening. But I guess I am still worried that I don't yet know how to distinguish PMR inflammation pain from what could be DOMS.
If this is DOMS pain, how long does it take to go away? Before this started three months ago I was a runner. Can it really be the case that a few hours of gardening will now cause me to have 3 or 4 days of pain that even impacts my ability to walk? (Again, it's mild. Both thighs. But it hurts enough that my gait is affected and I need to walk carefully and slowly.)
If this is normal for PMR and I have to just accept an 80% reduction in my leg resiliency (at least for a while), I can accept that. I just don't want to mistake this for disease inflammation pain. You've told me before that if it's disease inflammation pain then it will get worse and worse over time. So far that hasn't happened.
Actually it is worse in the evenings and when I go to sleep (farther away from my pred dose). But interestingly it's not there in the mornings. Could it be that resting/sleeping regenerates my muscles and then when I wake up and move around the house the DOMS comes back? This is really confusing.
"Can it really be the case that a few hours of gardening will now cause me to have 3 or 4 days of pain that even impacts my ability to walk?"
Yes I'm sorry, it is so sometimes and why you need to really assess your NEW limits and avoid doing more than you can NOW cope with.
Stop worrying - take one day at a time and learn by your mistakes because only you can work it out. Now it may be that using pain gels or tylenol will improve the DOMS - everyone is different but it is worth the try. Icing and warmth probably are more use.
In a year you will look back at this, see how far you have come and wonder why it seemed so hard at first. Everyone does,
Perfect. Thank you. My rheumy is confused and now wants me to take NSAIDs as a way of diagnostically ruling out Enthesitis and other entheseal diseases (so that she can ween me faster from prednisone, I guess, which has been her ultimate concern). I looked these diseases up. My symptoms do not match them. I hate being in a positiion of trying to "convince" my doctor of the disease I have. But she's unwilling to prescribe other diagnostics.
Hello, don't know if this will help, but I am 54 and my blood work was normal, too. For me, they literally ruled everything else out, and I mean everything. I had MRI's, blood work sent to Mayo Clinic, chest x-ray for a tumor that can cause muscle breakdown and pain..I had felt better after Medrol Packs from Urgent Care twice within th last 6 months, so I was lucky my GP decided to trial me on prednisone. I am better, but not 100%..like 75%.. He just upped me to 20 mg from 15 mg but it hasn't been a week yet, so I cannot really report on that result. I guess my point is, what else could it be? That is the decision I came to after ALL else (as you mentioned some rare muscle disease) was not it. Interestingly, my ESR actually went up after my first blood check up, but would still be just over normal at 33..and that still didn't really convince him..but at least he upped me.
The fact that pred took your pain away would be enough proof for me..don't know what to tell you other than be adamant with them and go with your gut.
Make sure your not heading for GCA all your problems my husband had and his doctor didn't investigate until it was too late and he is now blind. Keep pushing to get some answers. Good luck.
How would I know? I don't have headaches, scalp sensitivity or the other symptoms. Closest thing is front of the neck pain and tightness. But I hear that is PMR.
Also, I am so sorry to hear about your husband. That is just terrible. Only yesterday I read a about GCA and how many people each year go blind when it is totally preventable with quick action. That is so tragic. I cannot imagine how difficult it must be for both of you.
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