Hope this isn’t a naive question but is it possible to have a PMR flare without raised ESR or CRP levels?
I was diagnosed two and a half years ago and started on 10 mg Prednisolone, which helped a lot and I was able to lead an almost normal life (apart from the running and hill-walking). I gradually reduced to 5 mg and was feeling fine, but following travel injections (about which I posted) I increased the dose to 6 mg before an active holiday in Madagascar. I coped well while away (taking rests when needed) but after a 36 hour journey home (flight delays, missed connections) and then 2 weeks of visitors (arranged when I was feeling well) I have felt achey everywhere (not just shoulders and hips) and have extreme fatigue. I increased my Prednisolone to 7 mgs and saw my GP who said it was a flare, arranged an FBC, and erred on the side of caution and also checked for malaria. All results were normal, although I noted that ESR and CRP had not been requested. The only abnormality was a raised neutrophil count. A second blood test again showed raised neutrophils, still no ESR or CRP requested. This last week I returned for a final blood test. Still no ESR or CRP requested so asked the nurse if she could do this which she kindly agreed to do. Results are all normal, including ESR and CRP, except for a still raised neutrophil count. I have not felt any benefit from the 7 mgs of Pred but my GP says to stick with this dose.
I feel much worse than when first diagnosed. Fatigue to the point of trembling if I attempt too much (which isn’t actually much at all) and very foggy brained. One example of fatigue - went shopping with my sister. After 2 hours and 2 coffee breaks I had to lie on the back seat of the car in the car park until I felt well enough to drive home.
Sorry for rambling but I would very much appreciate some advice, thoughts or reassurance from you lovely knowledgable people.
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Plantmad
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I'd wonder if it really is a flare of the PMR - I'd be much more likely to suspect the hellish journey simply being far too much and then you added a 2 week period of stress with visitors - that leaves me feeling wobbly without a flare!
I warn a lot about overdoing it - because I've experienced this sort of longer-lasting fatigue too. The bad journey was a factor - but you'd probably have recovered if you had gone to bed for a few days when you got home. You couldn't.
But I'd also say that 1mg extra probably won't do a lot for a flare if it is, you ARE at a dose of pred where adrenal function isn't maybe able to cope when you do too much, and yes, while on pred the rise in markers may be delayed.
PMRpro has answered so I won’t duplicate, but in reply - yes you can have a flare without raised blood readings.
Some patients have never had raised readings at all - and invariably even if you are one that does, they can lag behind the symptoms anyway. Or, strangely can be attributed to some else totally unconnected to PMR.
Thank you for this - to know this is probably a flare at least let’s me know what I’m dealing with. I have obviously been lucky in my PMR journey so far and my heart goes out to all of those who deal with dreadful fatigue on a permanent basis and I now understand how truly frustrating this is.
I have just had a first flare I think. PMR journey fairly sdeady reduction. But have done too much in end November. Neck and shoulders more pain than before. Upped pred and pain gone but stiffness and moderate fatigue present. My bloods have been normal throughout. .
My GP seems to think that if ESR is normal there isn’t a problem and is reluctant to increase the dose of Prednisolone. Not sure whether to just go ahead and increase the dose myself.
Glad your pain has gone and hope the stiffness and fatigue soon resolve too.
Very tempting to overdo it at this time of year isn’t it. We should all heed auntie bee’s advice.
Frustrating isn’t it. My GP queried her diagnosing of PMR. It does respond to pred. Is it something else? But clinical symptoms fit. But no elevated bloods. I couldn’t move my neck at all and can now.
I wonder if I should up pred again but think I’ll see if rest settles it all.
Hope you find some relief whatever you choose to do.
It has to be in context though - if my ESR is 16 it is very high for me with a personal normal of 4! But it is still within the normal range for a large population. That's why symptoms rule.
The inflammation has to be present high enough for long enough to stimulate the liver to produce the proteins that increase the CRP and ESR levels. If you are just on the cusp - the markers may well not rise enough to be noticeable if you don't have that context.
That’s interesting. I will try to discover what my ‘normal’ is. Just to clarify an earlier reply from me to Dorset lady - I agree with you that this possibly isn’t a flare but just a case of overdoing it and needing to rest. Don’t know why I said I was dealing with a flare. Brain fog or brain dead?! Thank you for your replies and good advice as always. Have a good Christmas.
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