Medications for Temporal Arteritis/Giant Cell Arteritis (GCA)

Thanks for your comments. My artery biopsy was in 2019 and was negative, as was a temporal ultrasound. The headaches could be from the muscle tightness in my neck and shoulders. But I also have body aches and maybe that is fibromyalgia.

50% of artery biopsies are negative. There are other ways of diagnosing GCA before you go blind. My ESR and scalp pain was enough to be given 40 mg of prednisone. It did the job and still doing the job many years later. But now we also have Actemra to help.

Bless you!!! I got type 1 a flu recently s d had to on 60 for awhile. They weened me down s d back down to five. Probably be on that for good. But five is great!!!!!!
Good luck to yuu and merry Christmas!!!

had eyes done 6 months ago/ june2023 lung cancer surgery chemo from july til nov
2 follow up cts are clear
Epithelioid sarcoma in lung lobe removed rare in lung doc want me do immuotherepy
to be sure since it very rare in lung less than 2% paper i read said 150 people since 1975???
neurocysticercosis next up
2019 had a cva was sent home 3 months later had a episode ended in hospital for amonth
for parasite in my brain it was in my body for 30 years we think.
2020aug a big cva coping vocal rehab some body rehab
no smell or taste,neuoropathy,aphasia, some memory problems
then turn 65 and doc want me to get scans a ct pet and mammo sent me to cancer specialists fl
sorry aphasia is hard

@animoosh1 Welcome to Mayo Clinic Connect! I’m very glad you found the site. And don’t worry about the aphasia—I understood everything!! You said that your doctor wants you to get some scans and send you to a cancer specialist. Does the doctor have any reason to be concerned about cancer?

lung cancer lobe removed , 6 mnths
chemo and maybe umminotherapy,the cancer was rare in lung
so she my doc wants to sure it gone 2 ct since chemo clear scans but my thyroid is going crazy
primary doc wants me on thyroid med but with all the other things that wrong my dads family 7 died from
heart attacks and the med scare me
going to call my old naturopath and see if he can help

@animoosh1 I’m happy to hear that your scans were clear. That must be a great weight off! But your thyroid stated going too much and your PCP wants you to take medicine for it? Is that correct? But you're worried about taking medicines because of your family history, correct? Your thyroid gland is extremely important to your entire body and metabolism and sometimes medicine is needed to keep it working well.
https://www.restartmed.com/what-does-your-thyroid-do/? This tells some of the important things the thyroid does for your body.
I understand that you want to see your naturopath and that’s OK, but you also want to treat your thyroid problem. Sometimes taking medicines can be scary, but they can also be lifesavers. Do you think you could talk with your PCP about your need to take thyroid medicines?

he want to put me on levo but my family history 7 members father familydied from heart attack
also i have 2 strokes in 2019 and in 2020in between was treated for a parasite that caused the strokes compacted the vein in my head 2nd one was after the treatment nov 2020
am on statin that keeps me weak legs/ when the heart doc put me inlow dose.10mg statin i started having muscle problems.
then lung cancer/lobe is gone, chemo, multi ct pet scans and a mammo 5 in year and a half 3 were in oct 2023 to march 2024 each time my tsh went up in week after
last ct was also throat,and thoricic one and she was no conserned
all my cbc were really good white cells were a little low blood test a week later my numbers were good

i found i needed some vitamin folate selenuim iron am going to in june immuniotherapy if cancer doc thinks iam good for it/rare cancer she want to be onthe safe side/dr ninian said my surgery was great very clean
removing the nodule

when italk to my cancer doc i will decide she actually works with us has her nurse call us along the chemo and multi tests for almosta year now /pcp is know as a pill pusher makes alot of money there pharm company
any just TELLS YOU no info
before you ask i have very hard time getting rides and all the other doc are 20miles away
had catact surgey in the middle of this 2 times 3 appt tere fault.had to go 60miles a day...
long 2 years
with health and nobody seems to talk to each other/thank for venting i work thruthing by writng i live alone and every one i use to know are dead or left the state wish i could!!!!

My husband was diagnosed with PMR in May 2023 and Giant Cell Arteritis (GCA) in February 2024. He landed in the ER and hospital for a weekend while undergoing testing and high dose IV infusions of methylprednisolone. He was very sick with horrible headaches, swollen temples, temple pain, scalp tenderness, jaw pain, his face was puffy and more. He had what his doctor said was the worse case of GCA she's treated. His required much more prednisone to control than most. It's finally under control (as far as pain, and his inflammation levels are within normal range now.) He was put on 80 mg daily prednisone after the three days of IV infusions (1200 mg for three days.) He just tapered to 70 mg per day and started Actemra shots a couple weeks ago. I gave him his third shot today. He is pain free. He loses weight on prednisone and gets jittery and shaky for a few hours each day. But he says he'll take that over the pain. We are hoping to continue tapering every two weeks. We got a second opinion and changed rheumatologists because the first one we had made some serious mistakes that could have cost him his life or his vision. .We now have the chief of rheumatology who agreed to be his doctor. She's the one who got things moving in the right direction after getting out of the hospital when his other doctor was giving us wrong information.

I don't know if any of this will be helpful to you. I see that your post was some time ago. But I figured I'd share in case it helps you or anyone else.

@animoosh1 You can certainly vent on Connect! This is a very safe place!
Do you live alone? House or apartment? Have you called your Agency on Aging? They may be able to help you with transportation and other issues. Life is so difficult for you right now. Please call the Agency on Aging. You need to get some help.
What is the most important thing you need help with right now?