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

@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.

Liked by charann2000

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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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Hi Tinkerbell, Just wanted to update you and everyone else with Temporal Arteritis, I called my Nose, Throat, Ear Specialist who originally thought that I may have this disease and told him how disappointed I was in my selection of the RA Specialist which I saw about two weeks ago and he referred me to another within the Aurora network whom he knows treats/diagnosis Temporal Arteitis, only thing this new RA Specialist is booked until August 22nd. I am going back to see my Nose, Throat, Ear Specialist on June 5th, so he said he would write an order to a biopsy and I am going to also ask him write an order for a neurological eye exam also at that time.
Thanks for the input regarding coding….coding is the key to everything within medical billing it seems. So far, I have not had as severe of an attack as the day that I self-admitted into the ER but it waxes and wanes and really never completely disappears. At times I have had floaters in the left eye, but several years ago I had them for the first time and had a comprehensive eye exam by a doctor of optometry/surgeon and no serious issues were found at that time. So with that said, I don't know if they are normal or related to Temporal Arteritis. I am not going to try to worry more than I have at times, but I am still going to continue to pursue this. I take Excedrin Migraine caplets at times and they offer a little bit of relief…even if it is just psychologically. Thanks for the input regarding getting six month eye exams. When you were on Prednisone did you suffer any issues with your eyes or other vital organs. Also, I am thinking on having a Vascular Surgeon do the biopsy of the artery. Did you experience any severe pain or discomfort and/or scarring from the procedure?

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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 – Hi – I have floaters that started a few years ago. They don’t seem to be related to my GCA. I sure hope they can figure this out. I have not had any issues with my eyes since being on Prednisone or other organs. I didn’t have any problems with the biopsy site until I got down to 20 mg. I then noticed numbness from the biopsy site to the area out from my eye. There was also some swelling. Since getting to 10 mg. on the taper the swelling has gone away but the numbness is still there. It does not bother me and I just notice it when I touch that area. You will have to sign a waiver and they give you a list of things that can happen. Some very scary. The night of the biopsy I had a lot of pain. They had given me a prescription for Tylenol with codeine and I used it. I was surprised at the amount of pain. I just had a local and the pain came as the numbing agent stopped working. Mayo had a plastic surgeon do mine. The cut was made in the hair so there isn’t anything you can see. I would ask the ENT to do another Sed Rate.
I am going to Mayo on Monday to have my ACTH Stimulation test done on Tuesday. I asked the Neurologist if they would do another Sed Rate just to make sure I am okay to have the test. I am at 5 mg of Prednisone now and just want to make sure my Sed Rate has not increased. I was 38 when I was diagnosed, 4 mm/1 hr 3 months later, then 2 mm/1hr after another 3 months and 7 mm/1hr the last two times. I have no idea what is normal for me when not on Prednisone. Keep me posted. Thanks and Good Luck

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So glad to find this group . I have t a. And it is so frustrating to not know anyone who has this .

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@654321

So glad to find this group . I have t a. And it is so frustrating to not know anyone who has this .

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@654321 – I felt the same way when I joined earlier this year. I am now a year and one month into my treatment. It is a long road. Any questions you have let me know. I am being treated at Mayo Clinic.

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I am being treated at University of Texas medical..I have RA and crushed
a Vertibra. I just went 2 wks thing I was cured. No pain at all. Then today reality hit

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It will be a year in July. They really have a number on me. No absolute diagnosis yet beside
RA

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Just wanted to let everyone know that I have not dropped the face of the earth yet….I have what appears to be a remission of symptoms for the past eight days with no treatment….I am enjoying being pain free for the time being but am wondering to myself if anyone else has experienced such an occurrence?
I am still going to see my Eyes, Ears, Nose and Throat Specialist this coming Tuesday and have an appointment with a different RA Specialist for August 22nd (the earliest I could get in to see this one). So will look forward to discussing this remission of symptoms. and request for an extensive eye exam and temporal artery biopsy….I don't know if this ever goes away completely on it's own. I also realized that I had a treatment of AMOX-CLAV 875-125 MG for TABLET (a strong antibiotic which I never had before) for ten days just one week or two prior to the onset of the initial symptoms back during the end of January and the beginning of February and wonder if this could have been the trigger for my Temporal Arteritis then and if it may be weaning out of my system finally? Lots of questions, but so thankful right now for the let up of symptoms presently.

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So new to this do you type to one person s comments or does it go to all? I do not have r a . But can t seem to get remission for my t a this time around .

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@oregongirl

I am being treated at University of Texas medical..I have RA and crushed
a Vertibra. I just went 2 wks thing I was cured. No pain at all. Then today reality hit

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How was your Vertebrae crushed?

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Has anyone remissions become active again? My sed rate and crp are high again? Currently on 7 mg of predizone .

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