Still sore on side were biopsy was done

[misaryk]

Hi, I has been now 10 days and I still can not touch the side of my head where the biopsy was done. My temples are still tender, and still feeling quite fatigued. I can't get a hold of my rheumatologist but I upped my prednisone to 30 mg without talking to her. I am wondering if that is still not enough. I am scared to up it too much I don't want to use up my prescription before getting a hold of her.

[Hidden]

Please don't up your prednisone anymore. Where were you prior to 30mgs?

I need two surgeries and both are on hold until I get to lower dose of prednisone. So apparently it has implications for healing

my advice is to ask here first before making med changes!!!

I only say that because I have changed my med out of fear and then find out it wasn't needed. I have to now taper down from a higher dose.

[misaryk in reply to Hidden]

Hi, and thank you for replying. 😊 That makes sense, I am just worried that maybe the GCA is not being treated quite enough at 25 mg. I am always so nervous about it affecting my sight or having a stroke. I know when she first had me tapper down quickly, and was down to 5 mg then the next day none, I ended up having a mini stroke. Which promptly made her out me back on prednisone and things cleared up. So I will keep calling and hopefully she will be back in. Once again thanks.

[Hidden]

Hello Misaryk I have PMR and GCA. I had a right-sided temporal biopsy on July 22. I found it traumatic and unpleasant and it set me back. I still have tenderness and pain in my temple and take co-dydramol painkillers most days. My rheumatologist doesn't know why I am still getting headaches but some of my meds can cause them too. Some days are good and I can go out locally on my own, or further afield if a friend with a car takes me. Bad days I spend resting at home. It is a difficult condition to manage but can be done and life goes on albeit at a slower pace. Good luck with your recovery, I hope you feel better soon.

[misaryk in reply to Hidden]

Thank you so much, yes it is hard to find s happy medium for sure. I guess I just have to be patient and realize things are a bit different now with having this disease. I know when I had my biopsy the surgeon didn't give enough freezing and part way through, I could start to feel things and had to say, aw excuse me but I can feel things! So they gave some more freezing. Not very pleasant for sure.😳

[woolyelly]

Hi Hun , I had a biopsy done a while ago and it's still tender now after months X but even before it was done it was always tender as the vain use to stand out like a snake .it was awful xx hopefully it will ease up .but I think a lot is that you have the condition anyway and to me it still feels like someone pulling tight on my veins abit like a vice squeezing it .

Take care Hun xxxx

[misaryk in reply to woolyelly]

Thanks Woolyelly, so I guess it is not unusually then to still be feeling on the tender side. Thank you you for responding and well wishes much appreciated! 😊

[woolyelly in reply to misaryk]

I wouldn't worry too much about the pain . It's a horrible feeling xx but maybe because we have this condition it just takes us so much longer to heal xxxx please take it easy xx

[misaryk in reply to woolyelly]

Thank you I will you too! 😊💕

[PMRpro Ambassador]

They will have damaged nerves while doing the biopsy and they take some time to heal so 10 days is still early. I'm rather appalled they haven't got back to your with a result after 10 days though - I think I might be searching for a more accessible doctor.

The pred has nothing to do with the fatigue - that is the underlying autoimmune disorder that causes the GCA. The only reason it might help the fatigue is that high doses can make some people hyper - and then they try to do too much!

[misaryk in reply to PMRpro]

Hi PMRpro thank you so much for responding. I know the surgeon said he had to go deep, so you are probably right about some nerve damage. When I did see my Rheumy last Thursday she did definitely say they found some large cells, so said that yes I have GCA. But she seems to not want to make my dosage match what would help with calming the inflammation at first she wanted to put me at 10mg. I know since joining this wonderful group is certainly not enough to get inflammation down. I am going to be calling her office again today. I took it upon myself and took 25 mg which helped more but I still think for a little while I need to probably be higher. What are your thoughts?

[PMRpro Ambassador in reply to misaryk]

You need a rheumy who knows what s/he is doing - your current one doesn't have a clue. You do NOT tell a patient they have GCA and keep them on 10mg. The usual starting dose is at least 40mg - for a patient with no visual symptoms and you use it immediately, even before the TAB is done because the risks of not doing so are too great.

As a basic approach this is good advice from a top UK rheumatologist and his team which is towards the end of the paper for GCA:

rcpe.ac.uk/sites/default/fi...

[misaryk in reply to PMRpro]

Thank you once again I will show this to her. Much appreciated. 😊 Have a great day!