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 | Jun 30, 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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your case sounds very similar to mine....started on 60mg in Feb. this year, am now down to 10mg starting today...I had a relaps about a month ago and had my dose increased for two weeks during that time. I didn't go blind but my eyesight has really gone downhill and my eyes constantly water which is a real nuicance and I still feel the pressure in my head...;my PMR is still an issue but heaps better than it was......I am nearly 64

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Mentor
John, Volunteer Mentor | @johnbishop | Jun 30, 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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Hello @robynann -- welcome to Connect. I'm glad you found us. Connect is a good place to ask questions and share your experiences with treatments. It sounds like your Giant Cell Arteritis was diagnosed this past February. Hopefully your PMR will continue to get better. I don't have GCA with my PMR but my first episode of PMR lasted about 3 years and went into remission for 6 years before I had another episode that lasted a little less than 2 years.

In addition to the prednisone, have you had to make any lifestyle changes to help treat the GCA? Eating healthier and more exercise helped with my PMR. I'm sure others here can share changes they have had to make to treat GCA.

John

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tinkerbell | @tinkerbell | Jun 30, 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 - Have you been to your optometrist or ophthalmologist? If you look at the side effects of Prednisone you will see that it sometimes causes cataracts or glaucoma or worsens these conditions if they are already present. I was seeing my Optometrist every 6 months until my last visit and she has moved me to once a year. I am now on 4 mg of Prednisone. I was diagnosed 2 May 2017. I am 75 years old.

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peach414144 | @peach414144 | Jun 30, 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

question Can Temperal Cell Arteritis affect just one of the eyes and not both?@

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tinkerbell | @tinkerbell | Jun 30, 2018

@peach414144 - I was told by my Neurologist that it can affect just one eye.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jun 30, 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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Hi Peach @peach414144 -- I think it can affect one or both eyes if left untreated according to a few references I've found.

-- https://www.hopkinsvasculitis.org/types-vasculitis/giant-cell-arteritis/

John

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lofa | @lofa | Jun 30, 2018
In reply to @tinkerbell "@peach414144 - I was told by my Neurologist that it can affect just one eye." + (show)
@tinkerbell

@peach414144 - I was told by my Neurologist that it can affect just one eye.

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I tho k it can be both eyes. Sorry didn t get a chance to edit.

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lofa | @lofa | Jun 30, 2018

I was told one eye and then the other also .

REPLY
lofa | @lofa | Jun 30, 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 was diagnosed s few years ago and it went into remission. It came back two years and the rhumotlogist started me on 10 mg. This worked a little while and I got to 5. Then crp and sed rate went back
back to 10 . Have gotten down to 7 until yesterday ....!!
Yeah!!! Crp dropped 5 points so now going on 6 for 1 month then 5 and redo blood work in 2 months. So happy!!!!

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654321 | @654321 | Jun 30, 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

So good to have people to talk to about this . Have not found anyone and been looking for awhile . Your case sounds similar to mine however no problem with eyes. Except have to take two kinds of drops for high eye pressure. 

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