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 - When you call in to make the appointment ask them if it will be covered by Medicare. If they say know then, I would get the referral from your ENT. Since you are not getting any place with any of the other doctors, maybe he can make another referral. My emergency room visit said my condition was life threatening.

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@captainkenny - They see a lot more GCA in Minnesota because of the Scandinavian population in that part of the country. I hope the medicine you are on helps with the rash and itching.

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@tinkerbell

@charann2000 - I see my optometrist every 6 months since the GCA started. She does a great exam and has the equipment to do more than the Neurologist was able to do. My optometrist told me that she has diagnosed people with GCA. It may make sense to schedule an appointment with your eye doctor. I know how frustrated you are since I went through the same thing. You get to the point that you don’t know where to turn next. We are lucky that we live 2 hours from Mayo and were able to go through their emergency room. I wish there was something I could do for you.

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@captainkenny - I feel the same way that I was lucky to be diagnosed after one month. Lots of frustration before the diagnosis but lucky I did not go blind. I can’t wait to get off of the Prednisone but continue my slow tapering. The only problem I have had is with my Rosacia. My dermatologist told me it would get worse as I taper down and she has been right. I use my Metro gel twice a day on my face trying to control it. Some small problems but so far I am doing okay. It will be interesting to get the results of the ACTH Stimulation Test which will be done on 22 May 2018. I hope to have the results the same day. Mayo is great about getting the results to the patients the same day they are done. When you had the biopsy was it only done on one side? I only had to have the right side done. They did not knock we out - just a local by the ear. We waited about 15 minutes in the operating room for the call and it was positive. I was happy they did not have to cut the other side.

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@tinkerbell

@charann2000 - I see my optometrist every 6 months since the GCA started. She does a great exam and has the equipment to do more than the Neurologist was able to do. My optometrist told me that she has diagnosed people with GCA. It may make sense to schedule an appointment with your eye doctor. I know how frustrated you are since I went through the same thing. You get to the point that you don’t know where to turn next. We are lucky that we live 2 hours from Mayo and were able to go through their emergency room. I wish there was something I could do for you.

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My rash was resolved with use of Mometasone Furoate USP. Cream lightly used. Keep it controlled. I had my rash for at least 4 yrs or more. This cream got it

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@tinkerbell

@charann2000 - The optometrist can code it with GCA and Medicare will cover the eye exam. I am not paying for any of my visits. Just tell them when you call in that the ENT has told you that you have GCA and you need an eye exam. I think that makes sense to stay with the Aurora Network. Have a nice Mother’s Day. You are right that stress just makes the GCA worse. The key to any visits to any doctor is the code.

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But due to eye on left I now need glasses. Three pairs.. 1 for sun glasses no bigocal as I use a cane and must be able to see concrete. Regular glasses same scrip for when no sun. Then bigocal for reading. R A has destroyed my in plants. I Pray I can get ins to pay for glasses.

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@tinkerbell

@charann2000 - I see my optometrist every 6 months since the GCA started. She does a great exam and has the equipment to do more than the Neurologist was able to do. My optometrist told me that she has diagnosed people with GCA. It may make sense to schedule an appointment with your eye doctor. I know how frustrated you are since I went through the same thing. You get to the point that you don’t know where to turn next. We are lucky that we live 2 hours from Mayo and were able to go through their emergency room. I wish there was something I could do for you.

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I am presently using Rx for Triamcinolone ointment 2X a day or as needed which provides some relief of itching; however, new lesions still present regularly. Thanks for the Mometasone Fuorate cream tip which I will mention to my doctor. Did your doctor seem confident your rash was linked to GCA, or was he just trying it to make the determination?

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I was sure I fit the profile for GCA when I heard it it was more prevalent in Scandinavian countries. My father was born in Sweden, my mother’s folks were also born there, and there are lots of scandinavians up here in Minnesota.

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@tinkerbell

@charann2000 - I see my optometrist every 6 months since the GCA started. She does a great exam and has the equipment to do more than the Neurologist was able to do. My optometrist told me that she has diagnosed people with GCA. It may make sense to schedule an appointment with your eye doctor. I know how frustrated you are since I went through the same thing. You get to the point that you don’t know where to turn next. We are lucky that we live 2 hours from Mayo and were able to go through their emergency room. I wish there was something I could do for you.

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I only needed my biopsy on right side too. It was a simple procedure done by an ENT.

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@captainkenny - Mayo should have a lot of information with all the Scandinavians in Minnesota. They have told me it is not inherited. We are thinking my father may have had it because he went blind in his 60’s and no one knows why. I was 11 when he died.
I had a lot of pain after my biopsy but then was fine the next day. I was actually surprised at the amount of pain. The surgeon did a nice job so no complaints.

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@tinkerbell

@charann2000 - I see my optometrist every 6 months since the GCA started. She does a great exam and has the equipment to do more than the Neurologist was able to do. My optometrist told me that she has diagnosed people with GCA. It may make sense to schedule an appointment with your eye doctor. I know how frustrated you are since I went through the same thing. You get to the point that you don’t know where to turn next. We are lucky that we live 2 hours from Mayo and were able to go through their emergency room. I wish there was something I could do for you.

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@charann2000 - I saw my optometrist yesterday for my 6month checkup. She said because I have a few other problems with my eyes she codes them with the different problem and now has added the GCA. She said if Medicare does not cover something you can always go back and dispute the denial.

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