update on biopsy

[Lynlea]

I have just received my results from temporal biopsy which is showing no sign of inflammation which doesn’t really surprise me.

I will speak to rheumatologist again in January to see what the next plan of action is. Good news is finally got gp to prescribe h2 blocker instead of ppi.

[DorsetLady PMRGCAuk volunteer]

Okay ….but don’t get too blasé about result - could be a false negative , so do keep monitoring your symptoms especially if you are still getting headaches and eating issues as you mentioned in previous posts.

Maybe have a look at TMJ/TMD symptoms-

webmd.com/oral-health/guide...

[Lynlea in reply to DorsetLady]

Thank you for the link just read through it. I do have a lot of symptoms listed, swelling on one side of face. I have a referral from dentist for maxillofacial so we will see how I get on.

[jinasc]

Yes I am not surprised either , but you have been on Pred since June last year or have I read your bio wrong.

[Lynlea in reply to jinasc]

Been on Pred since June 2022 but never really suffered bad headaches just mild headache which would not go when taking painkillers.

[Exflex]

Skip lesions have been mentioned on here before, meaning the gold standard TAB can be a bit hit and miss, but it’s the best there is. We really need more research for an innovative test, less invasive and more reliable. A blood test would be ideal, eg IL6, but in itself IL6 could be misleading which the experts may explain.

.

[PMRpro Ambassador in reply to Exflex]

IL-6 can be raised in a lot of conditions, not just GCA and PMR. Actually, the ultrasound technique is as good as TAB in terms of accuracy and can be used on other arteries too - the brachial and subclavian arteries in particular so also useful for extracranial GCA or LVV. But the same applies - there will be some patients where the accessible spots aren't affected.

An algorithm might be a good approach - a set of measurable things as well as symptoms but what they use at present for research purposes isn't adequate to catch the cases who lie outside the box - young, low markers and so on. It is deliberately narrow to be fairly sure cases included in research are definitely PMR and GCA is almost always the TAB or ultrasound result that is crucial. And that leaves out many. Which could well be an obstacle to finding the right "thing" - PMR isn't a single disorder, and different versions may need different sets of signals.