Seronegative PMR

[bmgtc]

I have been diagnosed with PMR, but have none of the traditional markers; ESR 2 mm/hr (normal), and CRP 1.3 mg/L (normal). I've had it for 6 months and only received 100% relief after receiving 1 shot of corticosteriod in each shoulder 2months ago. I was on Meloxicam (anti-inflamatory) and Cyclobenzaprine (muscle relaxant). I'm off all the meds now, but the pain and stiffness is coming back after receiving the injections. Does anyone else have seronegative PMR? How was it treated?

[Christophene47]

Up to 20% of people with PMR have no elevated markers; actually there is no definitive blood test for PMR; usually diagnosed by symptoms and initial response to prednisone; PMR initially responds to prednisone very quickly and dramatically.

[bmgtc in reply to Christophene47]

My rheumatologist said that because I didn't have the markers my PMR may not last as long as cases where there are markers. I'm just curious to hear from PMR suffers that did not have the markers how long there episodes lasted. Or, is there no correlation?

[Rose54 in reply to bmgtc]

Diagnosed in 2015 never had any raised markers so took a long time to get diagnosed due to this. Highest dose 15 Preds lowest 7 Preds at present on 10.5 after increasing to 15 Dec 18

[Christophene47 in reply to bmgtc]

I have never heard that before. Remember a blood test is a moment in time. You may have a subsequent test where the markers are higher or lower. Markers and titres do not always correspond to disease activity. Your doctor may be right, or thought saying that would make you feel better. I am well into my 3rd year with PMR without elevated markers and have steeled myself that the disease isn't leaving soon. I assume you have been prescribed prednisone. Keep us informed.

[Christophene47 in reply to bmgtc]

Take a look at comment by forwardmotion below; it is a good and precise response to your initial question.

[fmkkm]

Hi,

The term seronegative is not used for PMR or GCA because no one has identified a specific autoantibody that is attacking us. They have identified specific autoantibodies in rheumatoid arthritis so there is a test to measure them, RF or rheumatoid factor is measured. If they can’t measure any RF then they say seronegative.

The sed rate and CRP test are not specific for any disease they merely measure inflammation in your body. When we are on prednisone the inflammation goes down so the result of the sed rate is normal but we still have the disease.

[bmgtc in reply to fmkkm]

Your explanation was very helpful. Thank you.

[Soraya_PMR]

I’m one with ‘normal’ inflammatory markers (ESR 11 CRP 1)

We’re treated the same way as those with high results i.e. pred. There is no alternative treatment and if you have been given a diagnosis of PMR then the pred should follow.

Are you in the younger age group? as we seem to be the ones with low/normal results.

I started pred in April 2017 (age 56) at 20mg, now on 6mg after 25 months.

[bmgtc in reply to Soraya_PMR]

I wish I was in the younger group, however, I'm 61. Was in great health, haven't missed a day of work in 30 years...now this.

[Soraya_PMR in reply to bmgtc]

Well I wouldn’t call you old at 61!

[bmgtc in reply to Soraya_PMR]

Thank you for the smile this morning. (lol)

[Soraya_PMR in reply to bmgtc]

You’re as old as you feel....is the saying. Pre-pred I was 90 apparently, illustrated by the fact I could not keep up with an elderly neighbour of 87 when walking!

[Hidden in reply to Soraya_PMR]

I know that feeling. I get overtaken by everyone. I think i am really stepping out!! This started happening at 40 so am well used to it now.

[Hidden in reply to Soraya_PMR]

I was once in the supermarket and did that silly thing of getting a basket instead of a trolley. Half way round I was nearly on my knees and felt grey. A woman on a mobility scooter approached me and after a brief chat said she would get me a trolley. I protested but she zoomed off and brought one for me. I was very grateful but mighty embarrassed. 😣

[Soraya_PMR in reply to Hidden]

I’ve given up with baskets. Dangerous unwieldy things, jab and bruise your legs quite apart from yanking your shoulders out. And trolleys make quite a nice walking aid.

Which reminds me, must be 27 years ago, son number one a toddler, he liked sitting in the trolley. I had 6 or 7 items, so went to the 10 items or less aisle. Oh you should have seen the stares and heard the tutting. How very dare I bring a trolley into this special aisle? So I said loudly to anyone who cared to listen, “ I used to put him in a basket but he kept falling out!”

[Hidden in reply to Soraya_PMR]

😂😂😂

[Oxford8]

I was diagnosed with PMR last December after a long time undiagnosed because no blood markers. I was 72 so it's not just the youngsters. 🙂

[Soraya_PMR in reply to Oxford8]

True! But in PMRpro’s thread about ‘normal’ markers, most of us were ‘younger’. I should have said MAJORITY 😉

[Oxford8 in reply to Soraya_PMR]

🙂🌷

[stellafmdm in reply to Soraya_PMR]

Not me at any rate. My esr is always normal. The only thing that shifted it was my infected gall bladder last year. I was 80 then!

[Christophene47 in reply to Oxford8]

Ditto.

[Louisepenygraig]

I've never had raised CRP only ESR.

[Joblow]

Hello- My ESR and CRP were normal, just like yours. But because I’d had PMR 9 years ago after shingles vaccine (with elevated markers), I knew it was PMR. Started on 10mg/day prednisone and 15mg/week methotrexate in January and now 6.5 pred/day (and I stopped the mtx). I’m 69. Both times the severe pain, esp shoulder, abated immediately after starting oral prednisone. Because I was lucky getting off prednisone after only a year the first time, I am hoping to have good results tapering now as well. So far, so good. I watch assiduously for new pains as I taper, and I realized that, at 69, I have some justifiable aches and pains from an aging body, those “normal” aches and pains were completely absent on 10mg pred. So now as I taper I try to be realistic: my lower back hurts because I was just raking, but it always hurt when I raked, etc. Yes, I know most on this site have had longer difficulties with PMR than I, but it ain’t over yet, and bodies do react differently, so I’m posting my experience.

[Christophene47 in reply to Joblow]

After 29 months, I had an elevated sed rate for the first time since diagnosis; the Dr. said those markers don't tell much. either, and it does no good to speculate as to their meaning; they are just indicators of general inflammation from anything; infection, trauma, injury, etc.

[PMRpro Ambassador]

I do - treated the same way as any other version of PMR: long term moderate to low dose oral pred.

And b*££"^&s to it might be shorter! I've had PMR symptoms for 15 years. My ESR has only once been out of "normal range" although it was raised for ME at times. CRP was also only ever raised once - on a day where I had a big atrial fibrillation episode.

[Jackoh]

I have PMR ( since Nov 2014) and GCA since Jan 2016 and have normal not raised ESR and CRP.

[_multistrada]

Hi this is also confusing me I am 60 Male fit and have a physical occupation I have had conflicting information from two doctors one said I had PMR put me on preds The other doctor was unsure I had PMR as my markers were very low and has asked me to reduce my steroids as soon as I do all the symptoms reappear extreme shoulder pain weak arms lower back and legs the biggest problem I have not knowing if I do or don’t have PMR I’m angry with my body and confused I’m self employed so have to keep working which is very hard if nothing else it’s nice to have An.outlet using this website ,

[Oxford8 in reply to _multistrada]

Hello Multistrada, That sounds like PMR to me but any time now you'll get responses from our amazing gang of helpful and knowledgeable folk.

Can you post yours again as a new post because it might be lost at the tail end of an old one! but I 'm sure someone will pick it up and respond anyway. Sounds to me that your first Dr. is right. I have PMR and my blood markers have always been normal. Take the pred!

[Hidden in reply to _multistrada]

Try this link. It's not by itself ..if you Google normal ESR PMR, or similar, there are lots of discussions about it.

ncbi.nlm.nih.gov/pmc/articl...

[bmgtc in reply to Hidden]

I must be in the 1.2% talked about in the article that has both normal ESR and CRP.

[Hidden in reply to bmgtc]

Yes. Did you see the figure for ESR was 7 to 22% of people with normal ESR with pmr. I read something else that had higher percentage for CRP too but I can't find it at the moment. I only use a smartphone and it boggles my eyes eventually.

[bmgtc in reply to _multistrada]

Hi Multistrada. The first rheumatologist I went to said I had oseoperosis and spinal stenosis and there was no way to treat it for the rest of my life. I spent the next 2 months in pain going to every specialist/surgeon that would see me. Finally, a neurologist who was testing me for nerve damage (this was a bright guy) said you need a 2nd opinion from another rheumatologist. The 2nd guy I see spends 15 minutes with me and says "you have PMR". But, I said I don't have the markers. He says "I see this all the time". One shot of cortisone in each shoulder and I was absolutely normal in 2 days. But, the PMR symptoms slowly came back. I go to see him tomorrow and I'm pretty sure he'll put me on oral Prednisone.