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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@654321

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

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A rhumatolgist or optamologist also treats this

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@654321

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

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Definitely an RA Specialist and be sure they have substantial experience in treating Temporal Arteritis, just don't go with one saying the they treat all auto-immune diseases....that's a blanket statement and does not mean they have ever treated that specifically. (I found that out first hand myself).

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@oregongirl

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

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Hey Oregongirl, It will be a year in July for me too since my Temporal Arteritis (TA) diagnosis, and still no conclusive treatment for my itchy rash that I have been doctoring with my regular MD, four dermatologists, and a rheumatologist. Two biopsies and lots of blood lab work, and tried several meds without success. My delima: Dermatologist thinks it’s part of my TA (I do too), and Rheumatologist doesn’t think it’s related. Just consulted with my MD about going to Mayo Clinic, he suggested I try another dermatologist first. So He wrote an urgent referral and I have a Wednesday appointment.

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@oregongirl

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

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@captainkenny - I sure hope this doctor can figure out what is causing the rash.

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Just an update as I went to my Ears, Nose and Throat Specialist today and he is going to try to get me into an RA Specialist sooner than August 22nd. Also, we discussed my ongoing remission of symptoms and he thinks I could possibly be suffering from migraine related headaches that are a lesser nature form than Temporal Arteritis but an offshoot of it. He said that I should be having a Fluorescein Angiography, where hey inject a special dye into your bloodstream and it lights up all the small vessels in the eye. He also told me that only after seeing the RA Specialist would the need for a temporal artery biopsy be necessary as it could possibly be something else in the vascular nature and if that were the case, I would have to see a Neurologist. Two of my blood tests which were done with the extensive panel of blood work last month when I self-admitted thru the ER had him more concerned than my Sed. Rate of 29 and they were an ANA SCREEN WITH REFL...POSITIVE AND A CO2 TEST RATE HIGH AT 25 mmol/L, BUT WITH BOTH OF THESE TESTS HE DID SAY THEY ALSO COULD BE A FALSE POSITIVE. So, again I really don't know anything with certainty regarding my status with TA but am so thankful that there has been a remission for the past two weeks and counting. If it were ultimately diagnosed as Migraine headaches specific to the temporal area I would be thankful!
Will let everyone know when I do hear more but that take a while unless I can get in sooner than August 22nd for another RA Specialist.

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@charann2000

Just an update as I went to my Ears, Nose and Throat Specialist today and he is going to try to get me into an RA Specialist sooner than August 22nd. Also, we discussed my ongoing remission of symptoms and he thinks I could possibly be suffering from migraine related headaches that are a lesser nature form than Temporal Arteritis but an offshoot of it. He said that I should be having a Fluorescein Angiography, where hey inject a special dye into your bloodstream and it lights up all the small vessels in the eye. He also told me that only after seeing the RA Specialist would the need for a temporal artery biopsy be necessary as it could possibly be something else in the vascular nature and if that were the case, I would have to see a Neurologist. Two of my blood tests which were done with the extensive panel of blood work last month when I self-admitted thru the ER had him more concerned than my Sed. Rate of 29 and they were an ANA SCREEN WITH REFL...POSITIVE AND A CO2 TEST RATE HIGH AT 25 mmol/L, BUT WITH BOTH OF THESE TESTS HE DID SAY THEY ALSO COULD BE A FALSE POSITIVE. So, again I really don't know anything with certainty regarding my status with TA but am so thankful that there has been a remission for the past two weeks and counting. If it were ultimately diagnosed as Migraine headaches specific to the temporal area I would be thankful!
Will let everyone know when I do hear more but that take a while unless I can get in sooner than August 22nd for another RA Specialist.

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@charann2000 - Happy to hear that your are continuing without symptoms. Great News. I hope this continues and that you do not have GCA. Looking forward to hearing about your next appointment.

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@654321

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

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It. Sure is good to know other people who have this besides me . Thank you all for your support .

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Charann2000.... I have had what I thought was remission going on for about three weeks. I thought, wow, I might have been healed. I kept waiting for the pain to return and it didn't. THEN, two days ago, Wow It hit hard. I have to walk my dog and the heat in Texas is horrible. I normally can do it fine if I am not in an episode. I don't even tell my kids I don't feel well anymore. They do not want to face it and as a result refuse to hear. My son keeps going to the RA dr with me to make sure she does not give me any crazy meds. He means well, but I have about had it. GET THIS SON. MOM IS NOT WELL. The kids keep blaming the meds for my RA.

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@oregongirl

Charann2000.... I have had what I thought was remission going on for about three weeks. I thought, wow, I might have been healed. I kept waiting for the pain to return and it didn't. THEN, two days ago, Wow It hit hard. I have to walk my dog and the heat in Texas is horrible. I normally can do it fine if I am not in an episode. I don't even tell my kids I don't feel well anymore. They do not want to face it and as a result refuse to hear. My son keeps going to the RA dr with me to make sure she does not give me any crazy meds. He means well, but I have about had it. GET THIS SON. MOM IS NOT WELL. The kids keep blaming the meds for my RA.

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Texas is very hot that is for sure . We moved here from Ky. The summers are much hotter.

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I moved here from Oregon

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