1. < Polymyalgia Rheumatica (PMR)

Medications for Temporal Arteritis/Giant Cell Arteritis (GCA)

Posted by charann2000 @charann2000, Apr 25, 2018

Anyone out there who has been diagnosed with Temperol Arteritis (Giant Cell Arteritis). I am undergoing testing and most likely have it. Would like to know how anyone is doing with it and what type of medications they use and any side effects, etc.

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tinkerbell | @tinkerbell | Apr 26, 2018
In reply to @tinkerbell "I was 74 when I was diagnosed. My symptoms started at the beginning of April. I..." + (show)
@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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Hi - Medicare covered my emergency room visit.

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Mentor
John, Volunteer Mentor | @johnbishop | Apr 26, 2018
In reply to @tinkerbell "I was 74 when I was diagnosed. My symptoms started at the beginning of April. I..." + (show)
@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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Hello @barba -- The reason your post has a lot of garbled text information in it is that you clicked Reply to the message from Connect in your email program. Instead I would recommend going to the bottom of the email message and clicking the View & Reply button in the message. It will take you directly to the discussion and allow you to post your message there.

John

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charann2000 | @charann2000 | Apr 28, 2018
In reply to @tinkerbell "I was 74 when I was diagnosed. My symptoms started at the beginning of April. I..." + (show)
@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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HI, Tinkerbell, I admitted myself to the Emergency Room yesterday afternoon after reading what you had to say on the 26th pertaining to your husband's research and also called my doctor's office...they said to go to ER if it was that bad. Well, I got all of the blood tests and it really helped being in the ER to calm my nervous system down. The blood work all came back and from what I was told it was good. My sed rate was 29....only 9 points higher that the range of 0-20, which the Physician's Asst. said was not that much elevated to be concerned about. So they told me I could go home and come back tomorrow, (Friday) for my regularly scheduled CTScan of the head, as it would bill at a lesser rate than thru the ER. I went back today and had the CTScan and my doctor should get the results early next week. Today, Friday, I actually had no pain whatsoever in my head the entire day without taking an OTC meds. I did not take any pain medication for the last three days after reading what you had told me and I thank you for that additional bit of info. The PA at the hospital said I may have a migraine. I told her that I very seldom if ever get head aches my entire life....I just dismissed that comment.
I will let you know next week when I speak with my doctor and he has all of the test results back. Once again, thank you for your guidance with this situation....I really appreciate it.

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tinkerbell | @tinkerbell | Apr 28, 2018
In reply to @tinkerbell "I was 74 when I was diagnosed. My symptoms started at the beginning of April. I..." + (show)
@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.

Jump to this post

Hi - so happy to hear you did go to the emergency room. As I told you before my Sed Rate was 37 and they decided that was high enough to start me on medication. It will be interesting to see how this turns out. Unfortunately, the only positive diagnosis is with the biopsy. I hope you do not have Giant Cell Arteritis. It is a long journey once you get started on the medication. I am looking at 1 1/2 years at the least amount of time. Do let me know what happens.

REPLY
charann2000 | @charann2000 | Apr 28, 2018
In reply to @tinkerbell "I was 74 when I was diagnosed. My symptoms started at the beginning of April. I..." + (show)
@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.

Jump to this post

I will let you know as soon as I hear anything, Tinkerbell.

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charann2000 | @charann2000 | May 1, 2018

I got the CT Scan results back today and luckily there is no sign of anything wrong on that area. I have been referred to a RA Specialist since certain areas of my blood work are marginal and my Sed Rate is 29....I still experience pain in the left temple but not as severe as last week when I self-admitted myself to the ER. I am going to the RA Specialist on May 10th and will post what transpires after that meeting.

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3 replies
Texas Freedom | @oregongirl | May 1, 2018

Did you get much help at the ER?

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10 replies
charann2000 | @charann2000 | May 1, 2018
In reply to @oregongirl "Did you get much help at the ER?" + (show)
@oregongirl

Did you get much help at the ER?

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I did get an extensive amount of blood work done, including SED. RATE, which is part of the marker for Temporal Arteitis and I had a CT Scan of the head scheduled for the next day since I had already had that scheduled prior to the ER visit and they felt, based upon my blood work results that it could wait until the next day. I will say that I felt a great deal of comfort phychologically being in the ER as opposed to sitting in my house and have this situation escalate with extreme pain and worry. I am not one to run to the ER unless I actually break some bones...so, to answer your question, it was most helpful to me and more comprehensive in the amount of blood work tests taken at one time. The only criticism I would have is that the second Physician Assistant really put it into the category of a Migraine headache which I knew it was not...never had them and very seldom even have headaches....this constant burning on the left temple which may escalate or subside, but it is always almost present. The first Physician Assistant left at the end of his shift and he was more knowledgeable I felt. It is a shame that they don't send a doctor in at some point with these ER visits....a Physician's Asst. is not a doctor and really should not be offering their personal views in such a situation in my opinion!

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tinkerbell | @tinkerbell | May 1, 2018
In reply to @charann2000 "I got the CT Scan results back today and luckily there is no sign of anything..." + (show)
@charann2000

I got the CT Scan results back today and luckily there is no sign of anything wrong on that area. I have been referred to a RA Specialist since certain areas of my blood work are marginal and my Sed Rate is 29....I still experience pain in the left temple but not as severe as last week when I self-admitted myself to the ER. I am going to the RA Specialist on May 10th and will post what transpires after that meeting.

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Hi - I am not surprised that the CT scan was normal. Mine did not show anything. You might want to think about seeing your eye doctor. The Neurologist really checked my eyes out in the Emergency Room. I saw my optometrist after I was diagnosed and she was very knowledgeable about Giant Cell Arteritis and knew a lot about the disease. Maybe you could get in before seeing the RA Specialist. Where do you live? I am in Orlando, FL.

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tinkerbell | @tinkerbell | May 1, 2018
In reply to @oregongirl "Did you get much help at the ER?" + (show)
@oregongirl

Did you get much help at the ER?

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Hi again. Before I was diagnosed I saw the PA at my Internist's Office. My blood pressure was high and all she wanted to do was double the amount of my blood pressure medication. I told her my Dermatologist's husband (a physician) suggested I have blood work and a CT scan if I continued to feel bad. She said it would be a waste of money and time. I talked to my Cardiologist after this happened and he could not believe that she wanted to double my medication. He said of course your blood pressure was high with this disease and not feeling well. So I certainly agree with your thoughts on the PA. I hope someone can figure this out for you.

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