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.

Liked by captainkenny

@oregongirl

Did you get much help at the ER?

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I only trust myself at this point in time….these PA are not doctors and that is what is important to remember when dealing with them! I believe that I will get a definitive answer when I meet with my RA Specialist. Right now I am taking Excederin Migraine Strength pills whenever I feel it is beginning to escalate insofar as the pain. So far, I am fortunate not to have the pain radiating behind the eye as it was last week, but I know that could happen again at any moment…. so thankful that it is not.

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@oregongirl

Did you get much help at the ER?

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Charan. My opinion??? It is dangerous to the patient to have one doctor replaced at end of shift by another doctor. The hospitals now have hospilist. Doctor who have no office and work for hospital. End of shift they are gone. Not only that when you are gone they are done with you. I broke my back and cannot get the university doctor to look at it and see that they did surgery right. They cannot see me for 90 days. I was in a different hospital. The hospital required I CK in again. Oh goodness. Advocate for yourself and refuse to leave hospital until you have talked to all doctors who worked on you. There is more to it but this is worst thing as a result of Obama care. Next thing..your scripts….get marijuana as fast as you can. They are reducing ins company portion on drugs to 5 percent. Good thing I am old

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@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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Tinkerbell…very interesting. When I had my brain checked for bleeding after my fall, he looked into my eyes. I have his card. He said I CD call him for appt. I am going to call him. Above left eye I have a large bump from my fall. I passed out. I want to know why it does not go away and my headaches are horrible.

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@oregongirl

Did you get much help at the ER?

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You know what is rather funny, my Otolaryngist (Eye, Ear & Nose Throat) told me initially that I may be referrd over to a Neuorologist but in the ER they had the name of a RA Specialist and when my Otolaryngologist phoned with the results of the CT Scan they said an RA Specialist also. Just wondering to myself why they changed their minds as to what type of a Specialist I should see. Temporal Arteitist is classified as an Auto Immune Disease so I guess why they chose an RA Specialist…who knows any more. Regarding my eyes being checked out in the ER, the first PA looked into my left eye and said it looked fine….he is not an eye doctor so again, I can only hope for the best with that. Luckily, I have experienced no flashing lights, or black outs of vision so far….this frightens me more than anything to be perfectly honest. I live in Milwaukee, WI and we do have top rate hospitals and doctors….I search for the best and usually find it in the medical profession.

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@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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At least it is worth a visit to get input from another doctor. You really do have to be your own advocate now days. I hope some doctor can help you.

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@oregongirl

Did you get much help at the ER?

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I have a friend that lives in Orlando half year and the other half in Milwaukee area. She talks about the wonderful doctors in your area. Are you of Scandinavian Descent or Northern European Descent? These are the people that are the most likely to get Giant Cell Arteritis. My father’s family was from Germany. Most of her doctors are from Froedtert’s Hospital. My doctor at Mayo gave me the name of a doctor for her to see about her headaches. Good Luck getting diagnosed.

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@oregongirl

Did you get much help at the ER?

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I am of Northern European descent. Froedtert is ranked as the number 1 hospital here in the greater Milwaukee area. Most of my doctors are out of Aurora and I have been happy with them for well over 28 years. Thank you once again!

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Can an 80 year old person donate a stage 3 kidney to a friend? peach414144

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@oregongirl

Did you get much help at the ER?

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My father was born in Sweden and my mother’s folks were, so I can thank my Northern European descendents for my temporal Arteritis which with I was diagnosed 10 months ago, only a few days before my 81st birthday. I am grateful my treatment is going well.

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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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@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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@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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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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@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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@ 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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@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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@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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