negative tests

[viamonv]

Just got blood work and biopsy results. Everything neg. next MRI. Did you all gets any negs. and you still had it?

[PMRpro Ambassador]

Up to about 20% of patients with GCA or PMR do not have raised blood markers. The biopsy is 100% accurate when they find the giant cells or signs of inflammation they are looking for. However, when they don't find them - the report is "negative" but it doesn't mean that the patient doesn't have GCA, it just means they didn't find what they were looking for and there are several reasons for that. Including the temporal artery not being affected at all or the bit they took in the biopsy not having even distribution of the cells. But other arteries can be affected.

[DorsetLady PMRGCAuk volunteer]

Hi,

Quite a few get negative results. If you’re talking about TAB then the sample of artery taken- which is very small may not contain any giant cells because a. They aren’t in that particular piece (but they could be in another sample) , or b. The Pred has reduced them back to normal. So a negative result doesn’t always mean you DONT have GCA, whereas a positive result confirms you DO!

If you mean blood markers, then some never have raised inflammation marks - so again - not a definitive result.

The only true test is your symptoms, if the Pred has helped them, then it’s GCA, if you stop the Pred and they return - same!

[viamonv in reply to DorsetLady]

thank you ladies. All tests are neg but the meds did work. now doing a mri. cutting back on meds as of today.

[SnazzyD in reply to viamonv]

That’s what happened to me, all tests negative/normal but 60mg Pred got rid of all my symptoms in 2 hours. On the basis of the symptom profile and my response, they say I have it and have treated me as such as of a year ago.

[viamonv]

They told me to gets off meds. Wing myself off.

[viamonv in reply to viamonv]

See I am afraid if I go off my pain will be back.

[DorsetLady PMRGCAuk volunteer in reply to viamonv]

I can understand that. But if the symptoms come back, then you have the proof you need. Hard on you, but you aren’t the first, and I doubt you’ll be the last to have to go down that route.

Is there any way you could see another Rheumatologist- one who might be a bit more open minded?

[viamonv in reply to DorsetLady]

Going to book one. thank you

[stellafmdm]

Yes, all my markers were neg. They never go up, The exception was my recent stay in hospital for an infected gall bladder. All the markers were all over the place!!

[Carrollee]

Hi viamonv. I had negative biopsy but was treated for giant cell anyway due to my symptoms. I already had pmr. All the best cc 🤗