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Acterma infusions for GCA

Posted by judycrocco @judycrocco, 4 days ago

Have GCA on Acterma infusions for 3 years no real relapsos. Had to switch doctors ( moved). New doctor wants to get me off Acterma Either just taper Acterma with no additional meds. Or start either Methotrexate or Rinvog. Has anyone tapered off Acterma and how. I have been off steroids for 1year plus. Thanks

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spinella | @spinella | 2 days ago

I was diagnosed with GAC in 2020. My inflammation numbers were over 300. I started Actemra injections in January of that year. I qualified for medicine assistance and started giving myself injections. I had read normally these injections are tapered off after two years. I asked about stopping the injections. At this point my inflammation number was 2 and had been for quite some time. I read that normal for GCA is 0 to 20. My doctor’s reply was I should stay on it because of my age. I started the injections when I was 80 and now I am 87. In April of this year I received a letter from my insurance company stating I was being denied help with my medicine. It stated my doctor didn’t follow a list of procedures for diagnosing GCA. Therefore, I didn’t have GCA and didn’t need the medicine. I am now experiencing problems with my fingers tingling and sometimes feeling numb. I read that this a sign that GCA is coming back. Has anyone experienced anything like this happening? I filed for a reconsideration of their decision and have not heard anything so far. I have made numerous calls and rarely receive a call back.

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judycrocco | @judycrocco | 1 day ago
In reply to @spinella "I was diagnosed with GAC in 2020. My inflammation numbers were over 300. I started Actemra..." + (show)
Profile picture for spinella @spinella

I was diagnosed with GAC in 2020. My inflammation numbers were over 300. I started Actemra injections in January of that year. I qualified for medicine assistance and started giving myself injections. I had read normally these injections are tapered off after two years. I asked about stopping the injections. At this point my inflammation number was 2 and had been for quite some time. I read that normal for GCA is 0 to 20. My doctor’s reply was I should stay on it because of my age. I started the injections when I was 80 and now I am 87. In April of this year I received a letter from my insurance company stating I was being denied help with my medicine. It stated my doctor didn’t follow a list of procedures for diagnosing GCA. Therefore, I didn’t have GCA and didn’t need the medicine. I am now experiencing problems with my fingers tingling and sometimes feeling numb. I read that this a sign that GCA is coming back. Has anyone experienced anything like this happening? I filed for a reconsideration of their decision and have not heard anything so far. I have made numerous calls and rarely receive a call back.

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@spinella If you are in US and have Medicare part b pays for monthly infusions with supplemental insurance paying balance. Check with doctor about infusions. Good luck.

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