Adjusting to life with temporal arteritis

Posted by MLeeB @MLeeB, Mar 21, 2016

Would like to hear from people that have gone thru or going thru temporal artritis. I am now going on my 5 month after being diagnosed. It is getting better but very slowly. Is this normal?

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@artist01

@angelbeard4. I had the very same easy time of it when undergoing the GCA biopsy. Not scarey at all.

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Actually when I heard about the biopsy, I did get scared! I'm so glad you brought this up. I have head several surgeries/procedures, but not on my head.

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@kimh

Actually when I heard about the biopsy, I did get scared! I'm so glad you brought this up. I have head several surgeries/procedures, but not on my head.

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I was nervous also. That was just the start little did I know , years ago.
Was diagnosed in Kentucky . Have lived in Texas for the last four years. My rheumatatoligst (sp) is very good and monitors me carefully !

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@artist01

@654321 Actemra, otherwise known as Tocilizumab, is given by injection. When researched online, it claims to be the one and only treatment for Giant Cell Arteritis. It's much easier on the system than Prednisone. I've found it to be helpful for easing the pain and symptoms of GCA.

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Going ask my doctor about it.

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@kimh

Thank you for all the information. Were the pains on your right side continual?

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@kimh. Yes, the pain was in the right temporal area of my face, just in front of the ear, and the scalp pain was on the right side too. The pain can be either side though, wherever GCA decides to strike each individual person.

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@kimh

Actually when I heard about the biopsy, I did get scared! I'm so glad you brought this up. I have head several surgeries/procedures, but not on my head.

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@kimh, don't be afraid of the GCA biopsy, Kim. Honestly, it was not bad at all, and just took a few minutes. You don't feel a thing, and there's no pain afterward.

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@654321

I was nervous also. That was just the start little did I know , years ago.
Was diagnosed in Kentucky . Have lived in Texas for the last four years. My rheumatatoligst (sp) is very good and monitors me carefully !

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To be honest, I have a few autoimmune diseases going on and am praying daily for them not to progress. Are you on any meds @65321?

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@artist01

@kimh. Yes, the pain was in the right temporal area of my face, just in front of the ear, and the scalp pain was on the right side too. The pain can be either side though, wherever GCA decides to strike each individual person.

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Right now, mine are (what I would call) sporadic headaches. I am already on prednisone and methotrexate (among other meds, for other things!). I am hoping that they will postpone what is feeling like the inevitable! I am so grateful for this site. You are all helping me calm my nerves!

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Also so glad to have this site . Very comforting !

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@artist01

@kimh, don't be afraid of the GCA biopsy, Kim. Honestly, it was not bad at all, and just took a few minutes. You don't feel a thing, and there's no pain afterward.

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Thanks @artist01 ! Having said that, with my luck, they will probably carve out what little brain is left! Seriously though, thank-you for sharing. When my doctors first mentioned it, I got a little freaked out. I have had several surgeries in my abdominal area, but the head area seemed a little scary to me.

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@kimh

Thank you for all the information. Were the pains on your right side continual?

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@kimh, the pain in my right temple area and right scalp were continual, not like a headache that comes and goes.

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@kimh

Thanks @artist01 ! Having said that, with my luck, they will probably carve out what little brain is left! Seriously though, thank-you for sharing. When my doctors first mentioned it, I got a little freaked out. I have had several surgeries in my abdominal area, but the head area seemed a little scary to me.

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@kimh. I was really scared too, when I was told I had to have a biopsy of my temporal artery! It wasn't one bit painful. My artery was so inflamed that the surgeon said to his nurse during the procedure, "Look how big it is!" He told me he knew without getting a biopsy report that it was GCA because the inflammation was so obvious. He confirmed that I had GCA right after the surgery. Don't worry about this minor procedure, Kim. You'll do fine! Warmest wishes, Laurie

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@kimh

Thanks @artist01 ! Having said that, with my luck, they will probably carve out what little brain is left! Seriously though, thank-you for sharing. When my doctors first mentioned it, I got a little freaked out. I have had several surgeries in my abdominal area, but the head area seemed a little scary to me.

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@kimh . Hahaha, don't worry, they won't go near your brain! I'm going to start calling you Nervous Nellie. 😂 That's what my 3 sons call me when I'm stewing too much about something. You're going to be fine! I hope all this info has put some of your fears to rest. Thinking of you. Take care.

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