GCA biopsy question

Bones, joints and muscles
1

had a biopsy on Friday and now my headaches are worse and more often. did anyone else have that problem? Is that normal? Just wondering.

2

Are you already on pred? It is an insult to the body - you are likely to feel worse in some senses yes.

3

yes, rhemy put me on 40 mgs a day. when the headaches started.

4

Do you have GCA? I have lots of headaches and my rhuemy said not to worry until I have jaw pain.
Eileen, if you read this what do you think?

5

have not been diagnosed yet. i believe she is waiting for biopsy results. she did treat with higher steriods just in case. i also have the jaw pain but not like the headaches.

6

Thank you, praying you don’t have GCA.

7

Some patients never have jaw pain and to restrict a diagnosis to including any specific symptom is rather silly. The headaches don’t have to be frontal either - GCA likes the occipital region, low down at the back, and I have heard patients being told their headache “is in the wrong place” because it was there. GCA doesn’t always affect the blood supply to the jaw - or anywhere else specific come to that so to rely on any one thing makes no sense.

8

If you have both jaw pain and headaches I personally would question whether 40mg is enough - I saw a recommendation last week that patients with jaw pain should be put on 60mg. It is in slide 62 of this presentation about the proposed new GCA guidelines from Prof Dasgupta in Southend:

https://www.keepandshare.com/doc/8192797/bsr-gca-guidelines-glasgow-september-2016-pdf-1-7-meg?da=y

This second link is about treating GCA more generally:

https://www.keepandshare.com/doc/8223713/treating-giant-cell-arteritis-by-hospital-health-care-pdf-185k?da=y

9

I had head and jaw pain…they lut me on 60mg. Had the biopsy 5 days later…came back negative.

10

It took 5 days for me toto have assumed GCA.I had different reasons from different drs as to why i did nt have GCA. In the end had a blood test …lab rang me up at 23.30. My esr over 100.

11

And a negative biopsy is NOT a reason for saying it is not GCA …

12

Thanks Eileen, now I know what to discuss with my rhuemy. Thank you.

13

she was worried about 60 mg messing up the biopsy so she did 40. hope to have results at end of week.

14

40mg will mess up a biopsy too - and may not be enough to prevent loss of vision. Having a negaative biopsy is not proof it isn’t GCA though - I can’t emphasise that enough.

15

i am hoping my rhemy is good on this and will not just go by the results but with the symptoms. i will see.

16

Let’s hope so Jill. My consult did go by symptoms. Also the results letter did say a negative result does not mean I didn’t have GCA.