Biopsy pros/cons

[4683Louise]

New member today- I am 7 months into PMR, 5 months with Prednisone (10 mg/daily), now 1 month of some potential GCA symptoms (Prednisone raised to 60 mg/daily). Would be grateful to hear experiences/insights on temporal artery biopsy.

[HeronNS]

Usually being on pred will erase evidence of the enlarged cells, especially the large dose of 60 mg. How long have you been taking 60? On the other hand I have heard of people who still get the positive result after several weeks so it may still be worth it. The benefit of a positive biopsy is that there will never be any question about the diagnosis. But as you probably know even those who haven't taken pred yet may still have a negative result if the section of artery biopsied happens not to contain the large cells they are looking for. This is why symptoms always trump the biopsy result.

[4683Louise in reply to HeronNS]

Have been on 60 mg for one week, Dr says to retest blood work in 4 wks. He wants a biopsy; seems to me that test is not reliable enough, especially considering the treatment for a positive result would be the same as I am on now. I know taking too much Prednisone unnecessarily is not good either, but at this point I'm listening to my symptoms. I like your comment "symptoms trump biopsy".

Thank you so much for your quick response. I am relieved to find others who understand and have experienced wisdom to share. It's a daunting landscape when you're new to this.

[Grammajoy in reply to 4683Louise]

My rheumatologist said having biopsy was useless because I had been on Prednisone for PMR long enough that the biopsy would be negative . I have all the symptoms of GCA so just I just keep on taking the prednisone

[4683Louise in reply to Grammajoy]

I am in the same situation, although dr. still wanting biopsy. I don't see the benefit esp with meds for symptoms anyway. I hope you are finding comfort. Have you tapered down at all? Do you have flairs?

[DorsetLady PMRGCAuk volunteer]

Hi Louise,

As Heron says the TAB is not always the gold standard acid test that the doctors believe it is. Yes a positive result confirms you have GCA, but unfortunately a negative result doesn’t prove you don’t - for a number of reasons.

With my GCA (undiagnosed for a long time) my temporal arteries were not affected, swollen nor painful, so if I’d had a TAB it probably would have proved negative - but I most certainly had it! Got the scars to prove it!

As said - symptoms are the key!

[Hidden]

Hi,

Is there any chance of them doing a Temporal artery ultrasound? If there is inflamation on that then proceeding to biopsy makes more sense.

[4683Louise in reply to Hidden]

Thank you for that suggestion! I have not heard of that. Will definitely request.

[Hidden in reply to 4683Louise]

Some information on the TABUL study which compared the efficacy of Temporal artery ultrasound with biopsy

ndorms.ox.ac.uk/clinical-tr...

I have been to a few meetings where they presented the results, interestingly even with biopsies there were false positives and negatives which were dependant on the expertise of the pathologist looking at the biopsies. A surprising amount of patients had a vein removed and not the artery!

It may be that your hospital doesn't have anyone appropriately trained but worth asking.

[4683Louise in reply to Hidden]

Thank you, very helpful article. Glad to learn of more options when things are starting to feel over-whelming.

So grateful for voices out there helping and understanding.

[PMRpro Ambassador in reply to Hidden]

Unfortunately too many hospitals hand the TABs to anyone who happens to be around - despite the fact that the skill of the surgeon is a crucial point in whether it will be useful or not. The standard of the pathologist varies a lot too!

[carolpatriarco01]

My temporal artery biopsy came back today...negative. I was told by my rheumy that the biopsy is as good as the person doing it. They have to do them all of the time and take a big enough section of artery then there shouldn't be a question regarding false negatives or positives. The jaw pain that I had been experiencing was from a bad tooth that was causing jaw pain...referred pain I'm told. Also this Dr. said as long as you are on at least 20 mg.s of prednisone for a time that there is protection from blindness. Said in all of the many years hes been specializing in PMR and Giant Cell hes never had anyone go blind if they were on 20 mg. prednisone. Just some things Ive recently learned. So now I will carry on trying to reduce my prednisone level and live with my PMR...enough to deal with after all.

[4683Louise in reply to carolpatriarco01]

Congratulations, that's good news! Glad to know about the 20 mg info. Here's to carrying on!

[Lanza23]

I too have PMR and GCA. I was put on 60mg in September and had a negative biopsy. I am now down to 15mg tapering very slowly as I am currently travelling in Australia and am going to see a GP here next week to get my bloods checked. My rheumy wants me down to 10mg before I get back to UK. Good luck with managing the Prednisolone and your biopsy.