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

I was diagnosed at Mayo on 2 May 2017. I am coming up on 1 year and it has been a long road with 6 more months. I had the biopsy on 3 May and had the diagnosis of GCA. The biggest problem has been the swelling and the weight gain. i was started on 60 mg. of Prednisone and am now down to 6 mg. I had one relapse going from 20 to 17 1/2. I had to go back to 20 mg. and then went to 10 mg. - 1 mg. at a time for 2 weeks between each step. I will be having a ACTH Stimulation test at Mayo on 22 May. This will tell me if my adrenal gland is going to start working again. This was suggested by my Endocrinologist in Orlando before she moved to Texas. The Endocrinology Department at Mayo is handling this for the Neurology Department. I like to look at the bright side since they diagnosed me before I went blind.

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@lofa - I know you are so happy to have gotten down to 7 mg. I am on 4 now but when I got to 6 mg I had some problems and decided to go to 6 1/2 that worked fine and now I am going down 1/2 mg. every 2 weeks. If I have any more problems they want me to go down 1/2 mg each month. I hope you can continue down with no more problems.

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@lofa - It can be in both eyes but sometimes in just one is my understanding.

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@tinkerbell

I was diagnosed at Mayo on 2 May 2017. I am coming up on 1 year and it has been a long road with 6 more months. I had the biopsy on 3 May and had the diagnosis of GCA. The biggest problem has been the swelling and the weight gain. i was started on 60 mg. of Prednisone and am now down to 6 mg. I had one relapse going from 20 to 17 1/2. I had to go back to 20 mg. and then went to 10 mg. - 1 mg. at a time for 2 weeks between each step. I will be having a ACTH Stimulation test at Mayo on 22 May. This will tell me if my adrenal gland is going to start working again. This was suggested by my Endocrinologist in Orlando before she moved to Texas. The Endocrinology Department at Mayo is handling this for the Neurology Department. I like to look at the bright side since they diagnosed me before I went blind.

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It will be interesting 1/2 may be an alternative . The crp dropped 5 points and is at 7.9 and sed rate 40.

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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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Wow that is an interesting story. What is your sed rate and crp now?

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@tinkerbell

I was diagnosed at Mayo on 2 May 2017. I am coming up on 1 year and it has been a long road with 6 more months. I had the biopsy on 3 May and had the diagnosis of GCA. The biggest problem has been the swelling and the weight gain. i was started on 60 mg. of Prednisone and am now down to 6 mg. I had one relapse going from 20 to 17 1/2. I had to go back to 20 mg. and then went to 10 mg. - 1 mg. at a time for 2 weeks between each step. I will be having a ACTH Stimulation test at Mayo on 22 May. This will tell me if my adrenal gland is going to start working again. This was suggested by my Endocrinologist in Orlando before she moved to Texas. The Endocrinology Department at Mayo is handling this for the Neurology Department. I like to look at the bright side since they diagnosed me before I went blind.

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@lofa - I have never had a CRP. My Sed Rate was 38 when I was diagnosed and my last Sed Rate was 8. I read that you should not go down more than 10% so this has been working for me.

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Hi everyone, I am going to throw something out there that just recently occurred with me and my possible Temporal Arteritis. I mentioned in my last post about one month ago that I seemed to be a remissive state for three or four week....it actually lasted a total of almost six weeks. However, I did not mention that since meeting with my Nose, Throat, Ear, Eye Specialist, this past April, I have been taking prescription strength Flonase once a day two sprits in each nostril and on occasion when I was experiencing extreme temporal pain radiating behind my eye, OTC Excedrin Migraine caplets two at one time once or twice a day. Well, after such a let up of symptoms, I stopped using the Prescription Strength Flonase and the OTC Excedrin Migraine caplets and within a week to ten days, I began to feel the symptoms beginning to gradually come back of Temporal Arteritis....which was very upsetting. I thought about it and thought it may be due to the fact that I stopped cold blank taking the Prescription Strength Flonase. (I had initially thought that I had a sinus situation, particularly on the left nostril but the doctor said if it is in the left temple as well as behind the left eye, it most likely was Temporal Arteritis.) I also began taking the OTC Excedrin Migraine Caplets which have caffeine on my own. Now after several days of going back on both the Flonase and occasionally taking the OTC Excedrin Migraine Caplets, I am feeling completely better. Just wanted to share this with everyone for what it is worth, but to me it was of great benefit.

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@charann2000

Hi everyone, I am going to throw something out there that just recently occurred with me and my possible Temporal Arteritis. I mentioned in my last post about one month ago that I seemed to be a remissive state for three or four week....it actually lasted a total of almost six weeks. However, I did not mention that since meeting with my Nose, Throat, Ear, Eye Specialist, this past April, I have been taking prescription strength Flonase once a day two sprits in each nostril and on occasion when I was experiencing extreme temporal pain radiating behind my eye, OTC Excedrin Migraine caplets two at one time once or twice a day. Well, after such a let up of symptoms, I stopped using the Prescription Strength Flonase and the OTC Excedrin Migraine caplets and within a week to ten days, I began to feel the symptoms beginning to gradually come back of Temporal Arteritis....which was very upsetting. I thought about it and thought it may be due to the fact that I stopped cold blank taking the Prescription Strength Flonase. (I had initially thought that I had a sinus situation, particularly on the left nostril but the doctor said if it is in the left temple as well as behind the left eye, it most likely was Temporal Arteritis.) I also began taking the OTC Excedrin Migraine Caplets which have caffeine on my own. Now after several days of going back on both the Flonase and occasionally taking the OTC Excedrin Migraine Caplets, I am feeling completely better. Just wanted to share this with everyone for what it is worth, but to me it was of great benefit.

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Interesting for sure .

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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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@crhp194 - How was your Arteritis found?

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@charann2000

Hi everyone, I am going to throw something out there that just recently occurred with me and my possible Temporal Arteritis. I mentioned in my last post about one month ago that I seemed to be a remissive state for three or four week....it actually lasted a total of almost six weeks. However, I did not mention that since meeting with my Nose, Throat, Ear, Eye Specialist, this past April, I have been taking prescription strength Flonase once a day two sprits in each nostril and on occasion when I was experiencing extreme temporal pain radiating behind my eye, OTC Excedrin Migraine caplets two at one time once or twice a day. Well, after such a let up of symptoms, I stopped using the Prescription Strength Flonase and the OTC Excedrin Migraine caplets and within a week to ten days, I began to feel the symptoms beginning to gradually come back of Temporal Arteritis....which was very upsetting. I thought about it and thought it may be due to the fact that I stopped cold blank taking the Prescription Strength Flonase. (I had initially thought that I had a sinus situation, particularly on the left nostril but the doctor said if it is in the left temple as well as behind the left eye, it most likely was Temporal Arteritis.) I also began taking the OTC Excedrin Migraine Caplets which have caffeine on my own. Now after several days of going back on both the Flonase and occasionally taking the OTC Excedrin Migraine Caplets, I am feeling completely better. Just wanted to share this with everyone for what it is worth, but to me it was of great benefit.

Jump to this post

@charann2000 - Hi it is Tinkerbell - The only thing I am worried about is that the medicine is covering up your symptoms. Have you had another Sed Rate? I sure hope you don’t have 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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I am confused . No big shock for me! I have temporal arterieres is this what most if you have ? 

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