Think I have Giant Cell Arteritis (or GCA)

Hi dbyme! Thank you for the information. How long did you have this before you
saw your doctor? Tell me about the biopsy do they put you out? does it hurt? what about
the MRI how does that work? I am 82 and I have to go through all of this!!! 60 MG. how long
on 60? did you gain weight from it? sorry for all the questions but you went through what I am
going through so I know what to expect. what is Actemra ? how long do you take that? How long does arteritis last?
Thank you for helping me.
marcia115

I saw my PCP twice, it was my ophthalmologist who sent me to ER when I lost sight in my eye. The biopsy was done at outpatient surgical center & I was put out, it was quick & painless. MRI was done in hospital, just my head went in, no big deal, I was on 60 mags prednisone for 4 weeks, I did gain weight, but I lost weight before diagnosis, so now I’m at my normal weight. Actemra is the medication my rheumatologist wants me to take so I can go off the prednisone. You take it by injection or infusion, I will do injection. Haven’t started it yet, it is being delivered next week, I will do injection myself. I think you stay on it for awhile, I don’t know if arteritis ever goes away completely. I am 72 years old. Don’t mind your questions, I had so many myself, still do.

dbyme, you're so thoughtful to answer all my questions, I have macula degeneration and get shots in
my eyes every 4 weeks, my left eye is very bad. so I can't tell with my eyes. sometimes when I read it is very
blurry. I also have an appointment with the rheumatologist for all the tests they want to do before I have the
biopsy. I didn't know they put you to sleep for it. how many stitches did you have to have? I could never give myself
a shot, I have essential tremors, and my hands and arms shake really badly.
May I ask you where you live? I live in Phoenix.
How long do you have to give yourself the shots? I would have to go and have the dr. give me the shot. how often do you have to do it?

Hello: They put you in a twilight sleep for the biopsy, like getting a colonoscopy, I didn’t feel a thing & the stitches just dissolved. I want to try the shot, you give it to yourself 2x a month, the infusion is once a month. My niece will teach me how to do the shot, it’s prefilled, like an epi pen. I believe I’ll be on the shot a year, maybe a little more. We’ll see, just taking this a day at a time & hoping for the best.

I have recently been having pain in my left temple. I have been tentatively diagnosed as having pmr. The Prednisone helped the pain a lot. But this with my temple just started a week ago. Also will feel like my pulse beating in my temple. That's a weird feeling. Have you had that?

Did you mention the temple pain to your doctor or rheumatologist? Temple pain can be a symptom of GCA and much more serious than PMR.

Hi @mrspunkin,
After about nine months suffering with PMR, I had a very stiff neck and short stabbing pains from my ear to my nose on the right side of my face plus a few times I could not see out of my right eye. Also, a tender scalp. I had a temporal artery biopsy on my right side and it was positive for GCA.
As @johnbishop mentioned, GCA is more serious than PMR. A doctor friend told me that if I experienced any visual disturbances I should go to the Emergency Room. as, untreated, GCA, which also ncan cause headaches, visual disturbances and trouble chewing, can result in stroke or blindness if not treated properly.

Can anyone tell me if Jaw twitching on one side with increase in hip pain both sides after reducing to 4 milligrams from 10, is the jaw twitching something to be considered about? My Rheumatologist is too busy to get back to me, I’m concerned cause I already have had one temporal biopsy it was negative 10 months ago.

my jaw tighten up and it was hard to open my mouth wide. That was my concern, had the biopsy and I had GCA.

For foreign travel, my Rheumatologist told me to take 40 mg. and go to the hospital….if I have any symptoms. CGA. Time is very important.
I take 1-2 mg. Prednisone daily for Polymyalgia. I have only symptoms for 2-3 minutes every morning. A strange pain that skips around the area of my lower back and left hip, as I exit my bed. . Bio-freeze works like a miracle, so I keep it by my bed. Rolling some on the general area, before rolling out of bed is ideal.