Some advice please....

[spoof99]

As I mentioned in my last post my ultrasound was negative for GCA and my biopsy is not scheduled until March 28th which would put me on Pred for 2 months, from what I have been reading I am not sure I should if I should go ahead with the biopsy given the lenght of time I have been on steroids.

Are they going to get a accurate biopsy after 2 months of steroids, I would rather not have someone cut into my head.

The biopsy should have been done weeks ago but such is our healtcare system it seems to take fore ever to get anything done!

I also have a follow-up with the Neuro via telephone next week I will ask her what she thinks about the biopsy, I will also talk to her about the 50% blockage in carotid artery frankly I am more worried about that than the GCA at the moment.

And for the record I still think I have GCA...and I also think because I was using blood thinners (ASA) that probably helped save my the sight in my right eye given I was having vision issues for 10 days before being started on steroids.

[DorsetLady PMRGCAuk volunteer]

Are they going to get a accurate biopsy after 2 months of steroids,

As we have said many a time there is no guarantee that you will get an accurate biopsy at any time. Although it is still considered by some to be the ultimate test, it can be a bit hit and miss… if it is positive then you definitely know you have GCA, but for various reasons you may get a false negative result..and that helps no-one. One reason being too long on Pred so no trace of the giant cells remains, but they aren’t spread uniformly through the arteries, so the section sample may not have them, nor may the that particular artery itself.

The procedure itself is not a bad as it sounds, the artery is only just below the surface,, that’s the reason why it’s chosen.

The choice is yours, of course, but it does warrant thinking about and discussing the validity of the procedure with your doctors.

[spoof99 in reply to DorsetLady]

Found out the biopsy has been moved to this Friday, so 5 weeks after the start of steroids.

[DorsetLady PMRGCAuk volunteer in reply to spoof99]

Okay… so are you going through with it? If so, hope it gives you a definitive answer.. please keep us informed.

[spoof99 in reply to DorsetLady]

yes I think I almost have too at this point, seems to me that the options to diagnose are limited.

[PMRpro Ambassador in reply to spoof99]

If it is positive - it is definitive. If it is negative - it isn't,

[spoof99 in reply to PMRpro]

and thats what I struggle with, I almost want a postive to just get it over with and move on, if it`s negative I am not really any better or worse off just left wondering what to do next!

[PMRpro Ambassador in reply to spoof99]

I know what you mean - knowing one way or the other is helpful.

[PMRpro Ambassador]

AS DL says - they are only positive in under 50% of cases so not 100% reliable at any point, The most accurate comment must be that since the likelihood of a meaningful result falls 10% for every week of high dose steroids - it seems rather a waste of resources and introduction of risk after 2 months. Because there ARE risks, there always are.

[spoof99 in reply to PMRpro]

I had the biopsy done today and it did not really go all that well...no complications but the surgeon said he could not find a good artery to get a good sample, he said he only got a very small bit...so pretty sure that was a giant waste of time😠but he did say don`t worry we can always try again😲don`t think so funny guy!

[DorsetLady PMRGCAuk volunteer in reply to spoof99]

That’s disappointing… to put it mildly🤣..but might enough [just] to get a result - hope so..

[PMRpro Ambassador in reply to spoof99]

If they could try again why couldn't he get a decent bit first time. Prat ...

[spoof99 in reply to PMRpro]

He mentioned trying a different spot...not going to happen my head is just a pounding I was not keen on doing it to begin with so there will not be a second attempt!