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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charann2000 | @charann2000 | May 3, 2018
In reply to @kanaazpereira "Hi @peach414144, I'm tagging @rosemarya, as she would be best able to give you more information...." + (show)
@kanaazpereira

Hi @peach414144,

I'm tagging @rosemarya, as she would be best able to give you more information. May I ask if you would share more details about your question?

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Yes.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | May 4, 2018
In reply to @kanaazpereira "Hi @peach414144, I'm tagging @rosemarya, as she would be best able to give you more information...." + (show)
@kanaazpereira

Hi @peach414144,

I'm tagging @rosemarya, as she would be best able to give you more information. May I ask if you would share more details about your question?

Jump to this post

Hi Kanaaz, I am happy to share the following information. Thanks for bringing this question to my attention.

@peach414144, I am a organ recipient. I want to send a very sincere thank you for your interest in organ donation. Glad to hear you are thinking about about living donation!

Be sure to check out the living donor toolkit and the recipient toolkit for resources and information that may be helpful to you.
https://connect.mayoclinic.org/page/transplant/tab/resource-36/
https://connect.mayoclinic.org/page/transplant/tab/resource-35/
I have not seen any definite cut off age for a living kidney donor. A donor’s eligibility requires a medical exam, because the health of the donor must be considered first.
Rosemary

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peach414144 | @peach414144 | May 4, 2018
In reply to @kanaazpereira "Hi @peach414144, I'm tagging @rosemarya, as she would be best able to give you more information...." + (show)
@kanaazpereira

Hi @peach414144,

I'm tagging @rosemarya, as she would be best able to give you more information. May I ask if you would share more details about your question?

Jump to this post

@ Can I, an 80 year old lady with stage 3 kidney diagnosis (which I am told is normal for an 80 year old): donate one of my kidneys (if it is a match) to a younger friend of mine 25 years younger? Or, wpuld my age prevent this (unless I am dead).

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tinkerbell | @tinkerbell | May 4, 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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My doctor at Mayo told me that they are looking at the Shingles vaccine and how it plays into GCA. He told me the people that get GCA and have had a Shingles Vaccine do better than the ones that did not get the Shingles Vaccine. Were are you in the tapering?

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charann2000 | @charann2000 | May 4, 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, Tinkerbell,

I actually had the original Shingles Vaccine when I turned 60 years old (nine years ago) and also had all of the Hepatitis Vacines at that same time just to err on the side of safety. I keep up with every immunization out there. I did contemplate taking the newer Shingles vaccination (Shingrix) but found out it was not yet covered by Medicare and it is quite expensive and also there are a number of people wondering how it will react to in their own systems. This is an excerpt from the Consumer Reports Organization. (https://www.consumerreports.org/shingles-vaccine/new-shingles-vaccine-shingrix-what-you-should-know) regarding the new Shingrix Vaccination and how it effects people who are on Prednisone and/or have auto immune situations:

"Right now, Shingrix is not recommended for older adults who are immunocompromised or are taking moderate to high doses of drugs that suppress the immune system.

But because the new shingles vaccine contains a nonliving viral particle, it may ultimately be deemed appropriate for those with compromised immunity. (Zostavax contains live—although weakened—herpes zoster virus, so those with significantly weakened immune systems should not receive it.) The ACIP will review data on Shingrix in these groups as it becomes available.

“Shingles is a big problem with immunocompromised people,” Schaffner says."

So I hope this helps in answering your questions regarding the new Shingrx Vaccine.

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captainkenny | @captainkenny | May 11, 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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Still hopeful my rash/itch will one day soon be gone.

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captainkenny | @captainkenny | May 11, 2018
In reply to @johnbishop "Hello @charann2000 There is currently another active discussion on giant cell arteritis here that you may..." + (show)
@johnbishop

Hello @charann2000

There is currently another active discussion on giant cell arteritis here that you may want to read through:
— https://connect.mayoclinic.org/discussion/giant-cell-arteritis-20c716/bookmark/?ajax_hook=action&_wpnonce=e2b2fbfe6e

I’m tagging a few other members who have talked about giant cell arteritis to see if they can join in the discussion – @kari51, @marylynn, @crhp194 and @morninglory do you have any information that you can share with @charann2000 on giant cell arteritis?

I'd like to invite @crhp194 @morninglory @anya @sallygosse to join this discussion, as well; they may be able to provide some more insights. We have another conversation on GCA, (also known as temporal arteritis), which you might wish to view:
– Adjusting to life with temporal arteritis https://connect.mayoclinic.org/discussion/would-like-to-hear-from-people-that-have-gone-thru-or-going/
I hope @donnalc @lindy @prednisone4gca @MLeeB also return to share their experiences.

@charann2000 — do you have any questions about giant cell arteritis?

John

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I got sidetracked to lots of discussions other than Temporal Arteritis, and am happy to finally be back where I belong.

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captainkenny | @captainkenny | May 11, 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 was diagnosed with GCA three months after you. I started with 40 mg Prednisone and now down to 10 mg. Three weeks ago started going to Rheumatologist who added Methotrexate to see if it would relieve my rash/itch. Is the adrenal gland function somehow related to GCA?

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captainkenny | @captainkenny | May 11, 2018
In reply to @tinkerbell "I would be happy to tell you about my treatment and problems." + (show)
@tinkerbell

I would be happy to tell you about my treatment and problems.

Jump to this post

I was an active 81 year old when my three classic temporal arteritis symptoms presented—mild re-occurring headache in right temple and forehead, sore to the touch, the final symptom that got my attention enough to call my doctor for an appointment ASAP, was my jaw so painful it was hard to chew my cereal. Only had symptoms 2-3 weeks before calling and getting in the next day after describing my symptoms. After reading the shares on mayoclinic.org, I’m grateful my Dr diagnosed pronto, ordered me to start 40 mg Prednisone in morning, and subsequently confirmed with biopsy.

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Mentor
John, Volunteer Mentor | @johnbishop | May 11, 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

Hi @captainkenny, I have no medical training or background but did find a paper on National Institutes of Health site that infers the adrenal gland function is not related to GCA under the Results section of the abstract.

Hypothalamic-pituitary-adrenocortical axis function in patients with polymyalgia rheumatica and giant cell arteritis.
-- https://www.ncbi.nlm.nih.gov/pubmed/12621591

John

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