Not yet diagnosed, looking for guidance
Posted , 10 users are following.
Hello. I am a 50 y.o. female in US. After 25 years of ongoing muscle pain (diagnosed a few years ago as fibromyalgia), I started having new and different pain and muscle weakness (both sides equally) just over 2 years ago..... first in arms, then progressing to legs. Really bad at first, then off and on a bit. Today, I have worsening muscle pain/tightness in shoulder joints and upper arms and hips/thighs. I also get very fatigued and weak. I really thought this sounded like PMR, but my rheum. doesn't think so because of sed rate and ESR (normal). (I've had extensive bloodwork and the only thing that comes back is postive ANA.) My primary dr. disagrees and thinks she should try the steroid treatment (but doesn't want to step on toes). Rheum started me on plaquenil (2 weeks ago) instead b/c of a sister who had possible lupus years ago. I am at a loss, and getting worse. Some days so hard to function b/c of weakness. No relief from rest, but unable to do much. I know you all know the frustration. Just reaching out to see if these symptoms are similar to yours. Thanks so much.
1 like, 9 replies
karenjaninaz karen52962
Posted
KAREN,
it does sound a lot like PMR and sometimes giving prednisone in 15 or 20mgn a day can be diagnostic if symptoms improve about 70% within about a few days. How about another rheumatologist opinion?
I am in NJ what state are you in? Maybe someone here can recommend someone in your area.
karen52962 karenjaninaz
Posted
I moved from PA to FL last year, so all drs are relatively new. My rheum wants me to see neuro (been there done that) next and go from there. I am so tempted to try the steroids just for some needed relief, but thought i should heed the expert opinion and try the plaquenil first (which of course takes up to two months to show effectiveness). Since the steroids work so quickly, feel like i should at least try. Maybe a second opinion needed.
ptolemy karen52962
Edited
Why don't doctors realise that around 20% of people never have raised inflammation markers. Do you think you could get your primary doctor to give you steroids just for a week as a test? That should not upset the idiot Rheum. Steroids usually work pretty quickly in my case it was within 15 hours, magic happened.
EileenH karen52962
Edited
I agree with the concept of getting someone to try a week of steroids. As in this publication:
http://www.rcpe.ac.uk/sites/default/files/quick.pdf
Have they checked your creatine kinase (CK) level?
And as pointed out - up to 1 in 5 have normal range markers although that doesn't mean they aren't raised for you. My personal normal ESR is low single figures, so 16-18 is running high for me but is very much "in normal range". But "normal range" means the range of readings found in 95% of a normal healthy population. of thousands. Not a range of readings that you would find in a single person.
karen52962 EileenH
Posted
Hi, thank you for responding. My creatine kinase was 83 (range of 29-143), and sed rate (by modified westergren) was 2 (ref range < or =20 mm/h)....plus many more. Dr went over all with me...just know all were "normal". (except ANA)
krillemy karen52962
Posted
Maybe you should check out polymyositis and dermatomyositis with the high ANA and as you describe your symptoms, Have you noticed any shrinkage of the painful muscles?
karen52962 krillemy
Posted
Thank you....I did have a "myositis panel" bloodwork done last year by a rheumatologist which came back normal. Not sure what that looked at, but I dismissed it after he did. Now I see that the symptoms are very similar to PMR. I don't know about muscle shrinkage yet, but I have major weakness in thighs and upper arms....severity waxes and wanes, but is sticking around more consistently in the last month or so. Fatigue can be overwhelming when it gets like this. Today I did more walking than usual...up a few flights of stairs too, and my legs are like rubber now.
EileenH karen52962
Posted
Myositis panel presumably includes sed rate, CRP and CK (creatine kinase) Many rheumies say you can't have PMR if the sed rate and CRP aren't raised - which is rubbish, up to 1 in 5 patients can have levels in normal range which isn't the same as saying they aren't raised for them: if your normal sed rate is 4 and it is running about 18 it is raised - but still "within normal range", a range established on the basis of thousands of samples from healthy people. Some forms of inflammatory muscle disease have a raised CK but not in PMR.
clicklaura karen52962
Edited
Hi,
It took me almost 5 months and as many doctors (including a Rheumatologist) to get my PMR diagnosis. Unlike you I had very high CRP and Sed rate (128!!! = very high), still not one of the docs figured it out. I'd say go to another doctor with your bloodwork, and go to another doctor and another until you find one who really, really listens to you. I am so saddened to have lost respect for doctors in general through this experience. And, I have learned MORE, way more through this forum than I did in the doctors office. We all have to be our own advocates today. Good luck to you. Hope to see another post from you with news of a specific prognosis/outcome.