Update, sorry it's been so long.

[twriller]

so last week at the rheumatologist she reduced my prednisone to 40 mg and we're going on a tapir to get the 20 in a month. Because 80 really didn't take away my temple pain nor did 60 it's almost like we are thinking is there also something else because we know it's GCA I had a confirmed biopsy. My blood work improved on the pred not the temple pain. So she suggested I see a neurologist and helped me get an appointment quicker and I actually got to see one in two days. When I tried to make an appointment myself the appointment was going to be in March! So anyway saw neuro, did a little bit of stuff and she decided to put me on gabapentin thinking that maybe the prednisone is taking care of the GCA but there's some residual nerve pain. Because I have trouble sleeping I was okay because I only have to take it at night along with my Ambien. Also ordered a brain MRI. So in a week and a half I'm having a brain MRI end a CAT scan of my aorta just to check it all out. Meanwhile I developed what I'm thinking is a GI bleed but realized I was taking the prednisone, ibuprofen for my compression fracture and an aspirin. This it seems is a GI bleed disaster waiting to happen. So I stopped the aspirin and the ibuprofen and have not had a problem since. Not looking to take that to a doctor because I had a full colonoscopy and even surgery on a hemorrhoid not a bleeding one this summer so I know I'm okay that way it has to be from the meds. If it occurs again I will I guess bring it up to a doctor but I don't want to. Oh she also ordered a B12 test because I have a burning tongue which I see goes along with GCA but she said could be B12 deficiency Port. Oh boy. Temple pain has been a little better but seems to still occur in the evenings

[SheffieldJane]

Dear God twriller! I wish you all the luck and blessings for the investigations. So glad you have stopped the Aspirin and Ibuprofen! I have known the odd soul needing 100mgs of Pred to contain the inflammation, but that is rare.

I am sorry that you are suffering so much right now. Please let us know how you get on!

[PMRpro Ambassador]

Looking forward to hearing the results.

[Devoid]

Hi I think it’s not that long since you had the biopsy, I had one in June and on and off still have pain, discomfort in the area , also with the puffy face and neck of high dose pred everything is stretched!! Lots of healing taking place

[lesley2015]

So sorry to see you are going through so much! Best of luck with further tests/scans.

Just a query, at the end of your post you mentioned burning tongue and GCA being related, I had not heard that before and I have GCA and burning mouth syndrome .... do you have any other information on the two being related please?

[twriller in reply to lesley2015]

It was in something that came up when I Googled GCA. If I see it again will let you know. I had burning tongue several years ago unrelated to this but I think it is autoimmune related. It went away after several months. Yet to be seen if it does this time.

[lesley2015 in reply to twriller]

Thanks twriller, I will see if I can find it anywhere....

[Hidden]

It's a pain all this happening but they all need checking to ensure correct treatment. 🌻