Connect
← Return to GCA prednisone vs. actemra infusion therapy
Discussion
GCA prednisone vs. actemra infusion therapy
Polymyalgia Rheumatica (PMR) | Last Active: 2 days ago | Replies (48)Comment receiving replies
Thank you Dad. Sorry it went to Therese.
This is all quite interesting. I've had a kidney cyst rupture, a cyst in my nose rupture and bleed plus bruising under an eye. This was NOT while Actemra but Methotrexate, then Kevzara. Perhaps the Actemra did calm the spinal cyst. I'm to start it this week as I'm quite sure I have GCA , terrible jaw pain, vision issues and headaches. Thank you so much for the explanation !!
This site is a godsend. 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, gain another 35 pounds, have sleepless nights, tachycardia and irritability. At least the election is over..haha. Think I mentioned having a second round of Covid in June too. Yours is a remarkable story indeed.
Thank you again for your time. We are in this together and knowledge is power. After 8 years of this, I'm hoping to learn more, protect my body and live the best I can.
Will know more this Wednesday.
Karo88135
Replies to "Thank you Dad. Sorry it went to Therese. This is all quite interesting. I've had a..."
Connect
"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."
-------------------------------
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.