← Return to Medications for Temporal Arteritis/Giant Cell Arteritis (GCA)

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@tinkerbell

I was 74 when I was diagnosed. My symptoms started at the beginning of April. I went to three doctors and no one knew what was wrong with me. After a month of not being diagnosed, my husband said that we needed to go to Mayo. We drove to Mayo (2 1/2 hours away) the morning of 2 May and only waited about 10 min at the emergency room. They took me in and did a CAT scan of the head and took blood. I was diagnosed and started on Prednisone in about 1 1/2 hours. I was seen by a Neurologist and she did a thorough exam and started me on 60 mg of Prednisone. My biopsy was scheduled for the next day with a plastic surgeon. Mayo took care of me for my breast cancer in 2013 so we knew how wonderful they are.
My veins on the right side of my head/face were swollen. I was taking Motrin because of the swelling which was probably bad because it masked the symptoms. Because of the Motrin, I did not have pain. I was taking the Motrin twice a day. With the Prednisone, I have gained 12 lbs. with swelling on each side of the neck, swelling in the stomach and midriff and a lot of swelling in the face. The Sed Rate seems to be the important test. MIne was 37 which was not extremely high considering some people are over 100. The 37 was enough for the doctor to start the Prednisone. Within 3 hours the pain was gone. I will always be grateful for the care that was given to me that day. I could have gone blind.

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Replies to "I was 74 when I was diagnosed. My symptoms started at the beginning of April. I..."

Thank you for sharing this very valuable information with me, tinkerbell. I have had this for about two months now and actually thought it was related to my sinuses and I was going to a sinus specialist which took one whole month to get in to see him. Yesterday morning I saw him and began with mentioning the pain in the left temple and the left eye. He really honed in and listened to me closely....after doing a brief examination of my nose and several other questions which I answered pertaining to my sister having RA, he said I don't believe the temple situation is with your sinuses....it could be Temperol Arteritis. He said he would write an order for a CT Scan with contrast die of my head and the necessary bloodwork in order to make determination. He did not mention to me the possibility of going blind....I suppose he did not want to frighten me before a final diagnosis. Last night I went on Mayo.com and researched this and was horrified to hear how serious this could potentially be. The going permanently blind bothered me more than anything else and still does...I think I am in a panic mode right now. I am going tomorrow for all of the blood work and they are doing the CT Scan of the head on this Friday at noon. Right about now my temple is throbbing and I am afraid to go to sleep as I may wake up without vision. I wish that my Specialist would have stressed getting me into the diagnostic areas that same day, if possible. Right now, I feel like I am losing precious time! I hate the thought of worrying the entire weekend for the results and perhaps they will be able to hasten the process given my circumstances. If not, my sister has RA and perhaps I will ask her for some of her Prednisone to get me through the weekend until I can see a Neurologist. You can tell that I did not see this coming....I was blind-sided, pardon the ill pun! Once again, thank you for your input. I will let everyone know what is going on as soon as I get the test results!

I also have giant cell arteritis but mine is in the aorta. I was diagnosed in 2016. There are no symptoms for my Kind but I can tell you that medications will take care of your arteritis. My arteritis is checked by a simple blood test every three months and my inflammation continues to go down. Please don’t be consumed by worry as there are answers to your problem. Probably you will be on prednisone and an anti-immune drug. The prednisone will help very quickly and you will feel better. Take care and best to you!

Treatment for my temporal arteritis started
ten months ago, sounds similar to yours: Prednisone, Methotrexate, and blood monitoring every three months. Developed itchy rash six months ago; my Rheumatologist doesn’t think it is related to my Giant Cell Arteritis.

Well can, your symptoms are identical be to mine. Then one day the rash began. Omg. It lasted about 5 years. I am not kidding. The med she gave me is Mometasone furoate. Actually dermatologist gave me this. Rash free now. It was awful..

I would recommend that you not start on any Prednisone now. My CT scan did not show anything so that is not the important test as far as the Temporal Arteritis. The most important test is the Sed Rate and you may want to try to get it done today. The other thing is you might want to go to the emergency room and they will do all the test right away. They listed the Temporal Arteritis as life threatening on my emergency room papers. It is very scary and my father went blind in his 60’s and that has always been something I was afraid of happening to me. At least your doctor ordered test on you and seemed to recognize what it might be. That is better than any of my doctors in Orlando. The biopsy will show the Giant Cell Arteritis even a week or so after starting on the medicine. This is not a disease you want to mess around with. Good Luck - do keep me posted. My recommendation holds - go to the emergency room.

Thank you for your kindly words and information.

It is Tinkerbell again. I was just telling my husband about your problem and he said (he has done tons of research on this since my diagnosis) the primary symptom of insufficient oxygen to the eye is eye pain. He said you should go to the emergency room right away. They need to get you started on more than 40 mg of Prednisone. I was put on 60 mg. They need to schedule your biopsy as soon as possible. Please do not wait - you do not want to go blind because you waited. Also, you will not get the results right away from the lab you planned to go to. This needs to be done stat!! Make sure the doctor in the emergency room does an eye exam. Mayo had a neurologist see me that did an eye function test in the emergency room. Keep me posted.

Hi Tinkerbell, I just read your most recent message and I have called my doctor's office (Specialist). I have had pain off and on in the left eye for the past several months with the left temple. My nervous system is becoming shot from this right now. I planned on going to the hospital for the blood work today, so if Medicare will cover the Emergency Room visit, I will do it. I wish my doctor would have mentioned this to me regarding potentially going blind and any escalation of pain in that eye needing to take immediate action. I will let you know as the day progresses what is going on.

It is Tinkerbell again. I was just telling my husband about your problem and he said (he has done tons of research on this since my diagnosis) the primary symptom of insufficient oxygen to the eye is eye pain. He said you should go to the emergency room right away. They need to get you started on more than 40 mg of Prednisone. I was put on 60 mg. They need to schedule your biopsy as soon as possible. Please do not wait - you do not want to go blind because you waited. Also, you will not get the results right away from the lab you planned to go to. This needs to be done stat!! Make sure the doctor in the emergency room does an eye exam. Mayo had a neurologist see me that did an eye function test in the emergency room. Keep me posted.

Hi - Medicare covered my emergency room visit.