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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robynann | @robynann | Jul 1, 2018
In reply to @tinkerbell "I was diagnosed at Mayo on 2 May 2017. I am coming up on 1 year..." + (show)
@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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Yes, l have seen him, the cataracts have stsrted, we're keeping an eye on that.....l am 63 and was diagnosed in Feb this year

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robynann | @robynann | Jul 1, 2018
In reply to @tinkerbell "I was diagnosed at Mayo on 2 May 2017. I am coming up on 1 year..." + (show)
@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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I'm not sure...mine is both

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crhp194 | @crhp194 | Jul 1, 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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It was found during open heart surgery to repair an aneurysm. The doctors took a biopsy then and that’s when it was found.

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lofa | @lofa | Jul 1, 2018
In reply to @tinkerbell "I was diagnosed at Mayo on 2 May 2017. I am coming up on 1 year..." + (show)
@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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Both meaning temporal arterieres and arthritics ?

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tinkerbell | @tinkerbell | Jul 1, 2018
In reply to @tinkerbell "I was diagnosed at Mayo on 2 May 2017. I am coming up on 1 year..." + (show)
@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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@robynann - I had cataract surgery when I was 70. The easiest surgery I have ever had. Now you just need to get better and worry about that later.

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charann2000 | @charann2000 | Jul 1, 2018
In reply to @charann2000 "Hi everyone, I am going to throw something out there that just recently occurred with me..." + (show)
@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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Hi Tinkerbell, I really don't think they are masking the symptoms, but I could be entirely wrong. Forgot to mention another interesting diagnostic tool, my Ear, Nose, Throat Specialist/Surgeon who originally mentioned that my symptoms sound like Temporal Arteitis said at a follow up visit three weeks ago, said that if I had Temporal Arteitis I would experience discomfort and tenderness each and every time I touched my left temple. When he said that to me, I immediately placed my hand on my left temple area and felt no discomfort whatsoever. Then he suggested I see another RA Specialist who really deals regularly with Temporal Arteritis and if he cannot come up with a defnitive Temporal Arteritis diagnosis to then see a Neurologist. To answer your question regarding having had another sedimentation test done, the answer is no not since I self-admitted myself through the ER in April of this year. I expect in August when I go to another RA Specialist he will request that and several other blood tests regarding RA again be done....that would be about four months since the last full blood panel done at the ER.

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robynann | @robynann | Jul 1, 2018
In reply to @tinkerbell "I was diagnosed at Mayo on 2 May 2017. I am coming up on 1 year..." + (show)
@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.

Jump to this post

yes, so true.....I try not to think about it all too much, I take every day as a blessing

REPLY
marylou705 | @marylou705 | Jul 1, 2018
In reply to @tinkerbell "I was diagnosed at Mayo on 2 May 2017. I am coming up on 1 year..." + (show)
@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.

Jump to this post

I had cataract surgery on both eyes last summer when I was 69.  I agree it was an easy surgery both times.  I had lung cancer surgery at the end of May this year and I’m still trying to recover from it.  @marylou705

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1 reply
lofa | @lofa | Jul 1, 2018
In reply to @tinkerbell "I was diagnosed at Mayo on 2 May 2017. I am coming up on 1 year..." + (show)
@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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Marylou, I hope you keep getting stronger and heal quickly.Lida

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tinkerbell | @tinkerbell | Jul 1, 2018

@charann2000 - The only time I had any pain when my temple was touched was when the surgeon pushed on it really hard as he examined me before the biopsy. I sure hope you don’t have GCA and it sounds like the medicine you are taking right now has helped. Keep us posted when you see the RA.

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