I’m sure I’ve now got GCA

[Shaza123]

I was suspected of having GCA 16 months ago when I was diagnosed with PMR ,but the biopsy I had after being on 100 mg of pred for two weeks proved negative. I have started with really bad head pains and jaw ache when chewing and when I have the head pains my BP rises to 166 /72 and I feel quite unwell . ( I am on BP meds)

Opinions please

[Koalajane]

I really think you should seek immediate medical advice, you could have had it last time as a biopsy is only accurate when it is positive. The biopsy may have not been the correct piece of artery!

[Shaza123 in reply to Koalajane]

I’ve read that once you’ve started the steroids it can also give you a false reading, I’m going to get in touch with my rheumatologist 👍

[SnazzyD]

Oh dear, do seek medical advice today. I don’t know what your GP is like but we find 111 is a much better route these days. Make sure you tell them that the biopsy was negative after a big dose (100mg is no small dose!) of Pred for two weeks. Even if it had been no Pred, if there were no giant cells in that sample because they were in another, deeper artery that they couldn’t reach, of course it’ll be negative.

[Shaza123 in reply to SnazzyD]

👍

[DorsetLady PMRGCAuk volunteer]

In that case it needs checking out - and asap...

[Shaza123 in reply to DorsetLady]

I’m going to try and get in touch with my rheumatologist today 🙏

[DorsetLady PMRGCAuk volunteer in reply to Shaza123]

Good… and please let us know what try say/do.

[PMRpro Ambassador]

A negative biopsy after 2 weeks at 100mg was hardly likely to be conclusive considering a lot of biopsies are false negatives even without the effect of high dose pred.

It needs checking out - and soon.

[Gimme]

As has been pointed out, the biopsies can give a false negative if they miss an affected part of the artery. I've just seen that you will try to speak to the rheumatologist today, but if you are not able to speak to them for any reason, you might call 111 and mention suspected GCA. In theory, that should trigger a fast track referral.

[tangocharlie]

Another option is to go to an optician who can look at the optic nerve, or direct to A&E and say you think you may have GCA

[Shaza123]

thank you everyone who has given me advice I really appreciate it. I’ve spoken to my rheumatologist nurse and he said I’m not to worry because if I have GCA I am already on the treatment they would recommend ie 8 mg per day pred and 20 mg methotrexate.

[DorsetLady PMRGCAuk volunteer in reply to Shaza123]

Your Rheumy nurse is optimistic if he considers 8mg of Pred and 20mg MTX is sufficient for a GCA flare… and if you still have headaches and jaw pain it’s patently not enough. If it remains the same you need to discuss again.

[PMRpro Ambassador in reply to Shaza123]

No idea where he got that idea from - 8mg is far too low a dose to manage GCA if it is flaring and MTX doesn't have that significant a role in GCA. Don't give up ...