"It sounds like you have a keeper for a rheumatologist. That is half the battle. I assume you had GCA also? There is no way I can do 40-60 mg prednisone again."
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Actually ... I have never been "officially diagnosed" with GCA but I don't need another diagnosis. I already have multiple autoimmune disorders. My rheumatologist needed to submit an authorization request so that I could be treated with Actemra. The diagnosis that Actemra treated was "refractory PMR." The request was approved with the stipulation that Actemra was used "AS IF" I had the diagnosis of GCA."
My rheumatologist says I have a full range of rheumatology problems which collectively are called "systemic inflammation." I needed a moderately high dose of prednisone for 12 years to treat refractory PMR. My other underlying autoimmune conditions were originally diagnosed more than 30 years ago. PMR was just my latest addition and was diagnosed approximately 15 years ago.
My most troubling autoimmune condition was recurrent uveitis. GCA isn't the only autoimmune condition that can cause blindness ... so can uveitis.
https://www.nei.nih.gov/learn-about-eye-health/eye-conditions-and-diseases/uveitis#:~:text=Uveitis%20is%20inflammation%20inside%20your,healthy%20tissue%20in%20your%20eyes.
I have had more than 30 flares of uveitis ... some of the flares were panuveitis. Panuveitis is the worst type of uveitis flare because it affects all parts of the uvea, from the front to the back of the eye. Typically 60 mg of prednisone was just my starting dose and sometimes that needed to be increased.
When Actemra worked so effectively for PMR, I had a massive flare of panuveitis within a week or two of discontinuing prednisone. Currently, as long as I get a monthly Actemra infusion all my autoimmune conditions are well controlled and my inflammation markers are negligible.
I have received excellent care from rheumatologists and several other specialists including an ophththalmologist who prevented me from being blind numerous times.
During the last few months I was on prednisone, I saw an endocrinologist who helped me taper off prednisone after Actemra allowed me to decrease my prednisone. I had secondary adrenal insufficiency resulting in a low cortisol level that was caused by long term prednisone use.
I have now been off Prednisone for close to 4 years. High dose Prednisone was my way of life for more than 30 years. My quality of life has improved greatly since I said goodbye to Prednisone.
Hi again dad. What an experience you have had!
I have a endocrinologist who is watching for hyperparathyroidism...won't discuss getting off prednisone as I still need it. 2 infusions of Reclast might have set off something. Probably low cortisol too with high parathyroid hormone.
Eyes have been checked, so far so good but blurry vision post cataract. Actually was accused of doctor shopping..just want answers. I didn't tolerate methotrexate or Kevzara but hope Actemra gives some relief and no serious side effects. You have been very helpful and the information about uveitis is quite enlightening. You are very educated regarding this, I'm impressed. Still ignorant on much of it but learning what to ask as there's not much discussion.
Again, thank you for your expertise and experiences, and sharing them. They are valuable to all.
Karo89135
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