Found some large cells in biopsy

[misaryk]

Hi everyone, so seen rheumatologist today, my temple and side of my head has been really hurting since I had my temporal artery biopsy. So I thought I better get it checked make sure no infection. The results were also in and it said they found some large cells, but making it highly suspicious of GCA but calling it a mild case of GCA? So my question is can a person have a mild case of GCA, she did up my dosage of prednisone to 20mg from 7mg. Thanks in advance.

[Ronswife]

I thought with GCA everyone starts with 60 mg but perhaps weight makes a difference. Im sure you will hear from others. So sorry.

[misaryk in reply to Ronswife]

Thank you in a strange way it is a relief to be certain what it is and now be on a plan of action to control it properly.

[PMRpro Ambassador in reply to misaryk]

Lots of people say something similar - it's the not knowing that is awful and the fear it may be something even worse than GCA. And there are plenty of those sort of things!

[misaryk in reply to PMRpro]

True enough! There certainly is and hopefully none of us ever find out.

[misaryk in reply to Ronswife]

I think it is between 40-60 I took 40 yesterday and the same today. I am going to be talking again with my rheumatologist. I don't think she fully understands this disease, and for some reason is on this kick of keeping the dosage as low as possible not taking into account about if it is helping the symptoms clear up or not. Since having 2 days at 40 my head and temple and jaw pain has reduced greatly.

[11caroline29]

Glad you got a diagnosis. My head was also very sore after temporal artery biopsy and black eye for a month afterwards. I was started on 40mg of steroids.

[misaryk in reply to 11caroline29]

Wow that's awful you had a black eye so I was lucky that way! I am glad it's over with and I finally have a diagnosis even though I would rather not have it at all. I think I may discuss going to 40 mg because when this all started I responded best between 50-40 mg.

[PMRpro Ambassador]

Yes, all things come in varying degrees.

Ronswife - no, 60mg is the recommended starting dose for patients who have visual symptoms. Some rheumies will use 60mg from the start but most will start at 40mg for even biopsy proven GCA that isn't yet causing visual symptoms.

The local rheumy here is of the opinion that most GCA will respond well to 15-20mg of pred. The proof of the pudding is whether your symptoms respond well and you start to feel better in that way. I suppose a higher dose will result in a faster resolution of inflammation and so symptoms. It's a balance of results and side effects.

[misaryk in reply to PMRpro]

Hi PMRpro, thank you once again for your knowledge. You have helped greatly!😊 I was actually going to talk with her of maybe upping it to 30 mg for a week then tapper down I seemed to respond to that level quicker. My temple and side of my head is really bothering right now.

[PMRpro Ambassador in reply to misaryk]

Really if you aren't getting at least some relief I would be inclined to call her and ask if you can take a bit more.

[Ronswife in reply to PMRpro]

@PMRpro Thanks for that correction on dosage. I hope I won't need it in the future but I want to be informed in case I ever develope GCA.

[jevuki]

So sorry to hear about the GCA it sounds like you caught it early, do you also have PMR?

[misaryk in reply to jevuki]

Thank you😊 She never said about PMR I will have to ask more questions regarding that. Good idea,

[DorsetLady PMRGCAuk volunteer]

I think you can have a case of GCA caught in the early stages! Which she obviously thinks she's done - hence the 20mgs.

It's a bit of a balancing act isn't it, too much Pred, too many side effects, not enough Pred, symptoms not fully controlled! I think it just a matter of go with her instructions and see what happens. But do monitor your symptoms carefully, and if they get worse in any aspect you need to contact her dept. Has she left you any leeway to increase your dose if necessary?

[misaryk in reply to DorsetLady]

Thank you DorsetLady, you have been a wrath of info through this whole thing too! 😊 I may call her and see if I can up my dosage to 40 for a week then tapper down, for I am really hurting at the moment. I don't know if the biopsy can cause a flare to happen or not?

[DorsetLady PMRGCAuk volunteer in reply to misaryk]

Don't know - never had one! But imagine the stress of having one as well as the physical discomfort would be enough to bring one on. Good idea to speak to her. Hope you soon feel better.

[misaryk in reply to DorsetLady]

Omg! I meant Wealth! Not wrath lol stupid auto correct.

[DorsetLady PMRGCAuk volunteer in reply to misaryk]

No probs! I guessed what you meant 😉I think I may have caused wrath elsewhere though. But that's life!

[misaryk in reply to DorsetLady]

I am sure not. Have a great day and thanks again. 😊