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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I have had it for about 5 years . It went into remission and came back about two years ago.
I’m on 7 mg of predizone daily. Feel so sorry for myself by trying to muddle through. It is good to talk to others who have this strange and odd disease .
Initially I was on 40 mg of predizone and tapered down. Can t seem to get any lower than 7 this time.

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@654321

I have had it for about 5 years . It went into remission and came back about two years ago.
I’m on 7 mg of predizone daily. Feel so sorry for myself by trying to muddle through. It is good to talk to others who have this strange and odd disease .
Initially I was on 40 mg of predizone and tapered down. Can t seem to get any lower than 7 this time.

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I HAD TEMPORARY BLINDNESS IN ONE EYE AND JAW PAIN BUT AFTER 2 days in hosp. I WAS TOLD NOT GCA. TWO MONTHS LATER after a biopsy in another hosp. Told I have GCA. Started 60 mg. Of prednasone and also methotrexate . One and one half years later down to 3 mg. Then my ESR and c reactive protein tests started going up so Now 6 months later, I am still on 5mg prednisone. I HAVE NEVER HAD much pain, but worry about my vision. It is a struggle. Good to talk to others. Feel not so alone.

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@elderdiana

I HAD TEMPORARY BLINDNESS IN ONE EYE AND JAW PAIN BUT AFTER 2 days in hosp. I WAS TOLD NOT GCA. TWO MONTHS LATER after a biopsy in another hosp. Told I have GCA. Started 60 mg. Of prednasone and also methotrexate . One and one half years later down to 3 mg. Then my ESR and c reactive protein tests started going up so Now 6 months later, I am still on 5mg prednisone. I HAVE NEVER HAD much pain, but worry about my vision. It is a struggle. Good to talk to others. Feel not so alone.

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Yes so good to talk to people who have this . This crp is what keeps going up with me also.
So glad your blindness was only temporary.

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@654321

Yes so good to talk to people who have this . This crp is what keeps going up with me also.
So glad your blindness was only temporary.

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@654321 - I was seen at Mayo for 1 1/2 year for my GCA and they never did a CRP test. I did have a SED Rate every 3 months.

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When first diagnosed they didn t do crp but do now along with the sed rate. Seems like one goes up the other down.

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@654321 - I am happy they never did the CRP or I would have had to worry about both of the tests. I call GCA my journey. I am now off of Prednisone and have only lost 2 pounds. I was hoping the 12 lbs. would just go away but no such luck. I found that once I got to 7 mg. I had to go down 1/2 mg every 2 weeks or they advised every month if I needed to go slower. If anyone has any questions, I would be happy to respond. They also advised me to have a chest x-ray once a year to check for an aortic aneurysm.

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@654321 - Just hang in there and hopefully you will be able to get off of the Prednisone sometime in the future. It is a frustrating disease.

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Thank you so much for your support.

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@654321 - I know how important it is to be able to talk to someone that has been through what you are going through. Sometimes we feel so alone and family and friends don’t understand what we are going through. Just remember to taper slowly even if you have to do 1/2 mg per month.

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@elderdiana

I HAD TEMPORARY BLINDNESS IN ONE EYE AND JAW PAIN BUT AFTER 2 days in hosp. I WAS TOLD NOT GCA. TWO MONTHS LATER after a biopsy in another hosp. Told I have GCA. Started 60 mg. Of prednasone and also methotrexate . One and one half years later down to 3 mg. Then my ESR and c reactive protein tests started going up so Now 6 months later, I am still on 5mg prednisone. I HAVE NEVER HAD much pain, but worry about my vision. It is a struggle. Good to talk to others. Feel not so alone.

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@elderdiana - My biggest fear was that I would go blind. My father went blind when I was about 9. We never knew why he went blind but we are now thinking he had GCA. They knew about GCA in the 50’s but I don’t remember my parents going to the doctor very often.

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