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← Return to Medications for Temporal Arteritis/Giant Cell Arteritis (GCA)
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Medications for Temporal Arteritis/Giant Cell Arteritis (GCA)
Polymyalgia Rheumatica (PMR) | Last Active: Jun 4 7:35am | Replies (431)Comment receiving replies
@charann2000 I was diagnosed with GCA w/ Temporal Arteritis 10 months ago and it has been an interesting journey. The Ophthalmologist I am seeing knows very little about it and he is making it up as he goes which for me is very frustrating and scary. For me my vision was affected extremely badly. I have maybe 20% vision left in my Right eye and maybe 50% to 60% vision left in my Left eye. When it came on I didn't know what it was and I delayed in getting treatment and by the time the Doctor realized what it was the damage had been done. My primary Doctor thought my vision loss (blurred vision, double vision, blind spots, darkness, etc.) was a temporary side effect to a medicine I was taking for my PTSD and Anxiety.
I have had a three dose round of high dose Prednisone Infusion when I went into the hospital for three days of testing and treatment in Sept 2025. Since then I have been on Prednisone tablets 60Mg per day. A month ago ago I went to the ED with pain in my lower legs and was diagnosed with DVT blood clots. I am now on Apixaban in addition to all my other medications.
I am now tapering off of the Prednisone. I started at 60Mg a day and I am right now at 30Mg a day. The Prednisone is being augmented by Methotrexate once a week.
I have an appointment with a Rheumatologist next week and he may put me on Tyenne but I will find out when I get there.
As I mentioned above my vision has been affected the worst and it is very frightening. What I have lost I will likely never get back and my Doctors are trying to save what they can. I am trying to adapt as best as I can but not knowing what to expect is the worst part of it. My Ophthalmologist is not helping because he is out of his depth with this. Unfortunately, where I live and the medical coverage I have I can't easily go to another Ophthalmologist so I am trying to stay hopeful and doing the best I can.
I am curious to know what the GCA did to you? Did you have vision loss or did you develop other issues? Apparently severe and extreme vision loss is not common with GCA so I am severely lacking for information. If you want to share from your journey I would look forward to reading it. You can post here or DM me. Good luck to you.
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@alandy233
Hi, I am sorry to hear that you are experiencing extreme loss of vision related to your temporal arteritis. Going to a Rheumatologist is the best thing you can do, more so than having an Optometrist try to treat you. You really need to have a referral to a Vascular Surgeon in order to have a sample taking of your temporal area to really get an accurate diagnosis of what you believe you have. Your Rheumatologist can make this referral for you.
To clarify my situation, I thought I had Temporal Arteritis, but it was not. I had one terrible occurence which I went to the ER and they ran massive bloodwork tests, primarily sedementation rates. Through the course of the past eight years whenever I feel it possibly acting up, I drink more water and take an Excederin Migraine pill (OTC) and try to calm myself down. This has usually worked for me. It is pretty scary stuff to have the feeling come on, especially with potential loss of your vision.
I also went to Optomologist/Surgeon after going to the ER and my ENT who said I had no visionary damage and also did not feel that this was Temporal Arteritis. I still do wonder to myself when these rare flair ups occur but luckily for me they are manageable.
I hope that you do not suffer any more vision loss and that you continue to receive treatment from a "qualified" Rheumatologist. Don't waste your time on doctors and optometrists who do not specialize in this field, they are only trying to grab a piece of the pie....no one can wear too many hats successfully!