Residual pain around biopsy area 11 weeks on

[Dochaz]

Is it unusual to feel headachy around the area the biopsy for GCA was done after about 11 weeks? It's not unbearable, but comes and goes during the day. They did biopsies on both sides. There were giant cells on the right, not the left, but strangely the headaches seem stronger on the left. Maybe just the healing process??? Love to everyone 😘

[SnazzyD]

Hello, on the one hand pain is to be expected but on the other there are aspects that are not ideal. Firstly, just because the giant cells weren’t found on one side doesn’t mean they weren’t there. This is because the giant cells can occur anywhere in those arteries and may just have not been in that sample. The reason they go to that artery is because it is convenient and the least invasive so it’s pot luck if the giant cells are there exactly. So your GCA could still be fizzing away anywhere in your head or upper chest. This is why a negative biopsy with symptoms is not a full proof negative diagnosis, but a positive one really is positive. Secondly, the biopsy is a minor op really, not just a scratch. They cut through a few layers of tissue and there are stitches under as well as on top (unless they glued it). It’s a proper wound which take months to heal fully inside and maturing can take up to a year. So it isn’t going to be like a scratch. Mine was tender for a good year but I could sleep on it after a month or so (I think). I did find it flared up when I was undergoing Pred withdrawal or I was ill, for a good 18 months. Niggles are ok but increasing pain or redness isn’t. Thirdly, your GCA. Reading your previous post it sounds like your GCA probably wasn’t being controlled due to not enough steroid, this could still be the case. Continuing headaches suggest your Pred dose is not sufficient for now. I’m only little and was started on 60mg then 40mg for 6 weeks and they reduced by 5mg because my symptoms had resolved. My sed rate was normal throughout so was no good as a guideline. Shen you say headache on the left, do you mean just on the wound or more global? Is it inside your head or on the surface?

[Dochaz in reply to SnazzyD]

It's inside, the surface wounds have healed nicely and aren't painful to touch at all. I guess it's the Gca itself and I'll no doubt need to increase my pred dose. I'm talking to my doctor at the end of next week about that. Thanks for the advice 👍

[DorsetLady PMRGCAuk volunteer in reply to Dochaz]

Are you still on 30mg as per your last post? If so, I might be inclined to increase to 35mg and see if that make any difference.

If it is due to too low a dose, the longer you leave it, the longer it will take to get back under control m.

As I said in previous post think you’ve been reduced too quickly.

[Dochaz in reply to DorsetLady]

It's not so easy here in France to up and down doses without a doctor's approval. Quantities of drugs given out are very closely controlled by pharmacies. If I up to 35 mg I'll be left short for the end of the month. But I'm taking all your advice to heart and will discuss it next week when I see my doctor again. I have a feeling that the GCA is sort of bubbling under the surface without actually flaring at the moment. It's hard to know. I'm new to the game!!!

[PMRpro Ambassador in reply to Dochaz]

One way to get a buffer of pred is to "lose" a pack ...

[Sophiestree in reply to PMRpro]

🤭 my kind of thing too

[123mossie in reply to PMRpro]

Or ‘the dog ate my pills’ as I used to get in the family planning clinic.

[DorsetLady PMRGCAuk volunteer in reply to Dochaz]

Please discuss -as there is obviously something not quite right! Couldn’t comment in PMRpro’s response ,except to 😉…

[Broseley]

My biopsy site is still tender after 7 months, but I only notice it if I wear a baseball cap or when I wash my hair. I sometimes get a slight throbbing pain there too. Mine was negative. I don't worry about it But I guess if you're getting actual headaches I would get it looked into.

[Dochaz in reply to Broseley]

Thanks for the info. That reassures me that the vague headachy oaind might just be the healing process.