temporal arteritis biopsy

[tazzi]

Hi,been on pred since 9/12/15 from 60mg down to 25mg & went to hosp.for biopsy today.After discussion with th surgeon i decided not to go thru with the procedure as the result would more than likely be negative after so long on pred. Have I done the right thing as it seems to be a box ticking exercise? I am feeling very well headache,jaw claudication,night sweats, & weight loss all resolved within days of starting the pred. thanks for your input.

[PMRpro Ambassador]

Are they going to continue to manage you as if it was GCA? The only real advantage of the biopsy is when they can get a positive result - that is 100% sure it was GCA, no-one will ever argue with that result and it qualifies you to participate in clinical trials. On the other hand, when you get a negative biopsy that does NOT mean it WASN'T GCA - it just means they couldn't find any evidence. Unfortunately, even the top experts have been heard to tell people "negative biopsy, can't be GCA" which is rubbish. (Sorry to sound so firm, but it is true!).

The bottom line with GCA is that it is a clinical diagnosis - suspicion on the basis of the symptoms. If they are going to go on your symptoms and the superb response you had to the pred then you made absolutely the right decision - some doctors feel that every week at a high dose of pred (above 20mg) reduces the likelihood of the TAB being positive by 10%. Given only about half are positive anyway - there wasn't much point doing one for you. They need to be done within days of starting pred - not weeks.

[tazzi in reply to PMRpro]

Thanks for responding so quickly PMRpro. Have made an appt.for Mon. to discuss the matter with my gp & hope thy are still willing to manage this as GCA.I had all the clinical symptoms and can't believe it is anything else! I felt that the biopsy was just a box ticking exercise as i already said and the knowledge gleaned from this community gave me the courage to say so,the surgeon didn't say as much but the distinct impression given was that he agreed with me.I'm slightly worried that not following the set procedure will somehow turn round & bite me with the rheumy.

[PMRpro Ambassador in reply to tazzi]

Lots of people are never even sent for a TAB - if it can't be done in a timely manner there is little point and you cannot delay giving pred to wait for the appointment. They are managed on the basis of the clinical diagnosis. Just don't ignore any return of symptoms as you reduce the pred.

[Polywotsit PMRGCAuk team member]

Yes I agree with PMRpro. With the biopsy they are trying to 'catch' a giant cell, but after two weeks on Pred those giant cells will have shrunk anyway and might be untraceable. It is just a matter of luck in any case whether they find one. So many rheumies will say that they are still sure it's GCA even though they don't have a positive biopsy. And the biopsy sample is taken from the temple by a general surgeon. Often they don't want to be too invasive and take too short a length out. Both ends start to necrotise straight away, so if there is less than an inch of good tissue to examine the biopsy will have been a waste of time. This is why we are placing our hopes in the outcomes of the TABUL study to find out whether ultrasound scanning can beat biopsies in terms of reliability. Biopsies are so unreliable the ultrasound would have to be dire to come out worse! (*in my opinion*)

[Celtic PMRGCAuk volunteer]

I would have made exactly the same decision as you for all the reasons stated in the replies already given. I didn't have a biopsy and, like you, had an amazing response to the steroid starting dose with all GCA symptoms disappearing as if my magic - in my case within a few hours at 40mg. PMR proved a more difficult nut to crack! Good luck with a continuing smooth journey to remission.

[Hidden]

I often feel that they ought to screen for any infection at the same time when they biopsy patients. what is the point? At least, you can find out as to which infection might be involved in your GCA. (There were proven positive cases of infection in dead GCA patients.).

Timing is rubbish. I was offered ultrasound after being on high dose steroid for a couple of months. Almost, it was too obvious it was going to be negative at that point. Why do they do it? I don't honestly know but similar things (that do not make any sense) do happen all the time. Not very clever, if I'm honest. Why could they expect patients to go through procedures, which would be likely negative anyway? I bet the surgeons would agree.

[PMRpro Ambassador in reply to Hidden]

"There were proven positive cases of infection in dead GCA patients"

If it is the work I'm thinking of - there were also a lot of patients who didn't show any evidence of infection. And really - you'd need an awful lot of artery to do these sort of tests. It's one thing when you can take unlimited amounts from cadavers!

[Hidden in reply to PMRpro]

Oh... that's so funny, PMRPro!!

[Caro12line]

Totally agree. Right decision. And interesting about the Ultrasound scanning. I had a TAB (after a few days on Pred). It was a clear negative, a "leading expert" told me I didn't have GCA. Symptoms remained, so further investigation. The Rheumy did a colour ultrasound scan of my armpits, upper arms, neck and chest and saw "something" I was a sent for a PETCT scan and they found inflammation in the Aorta Arch and Subclavian arteries. So diagnosed GCA. Also I have just been invited by the same "leading expert" to attend an ultrasound workshop as part of a Symposium on Large Vessel Vasculitus. Hopefully this is a way forward to quicker more accurate diagnosis.