GCA prednisone vs. actemra infusion therapy

"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.

"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.

May I ask, what state are you from?
Karo89135

"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.

Iowa ... a rural state but I had easy access to the University of Iowa Hospital. I lived a mile away and went to the hospital nearly every day to work. I was able to easily consult doctors and I frequently did while working as a nurse.

Ah hah, thought you were medical. Right place at the right time.
Thank you!

I am here to ask the same question. I’ve been on Actemra infusions for 14 months, and tapering prednisone which I have been on for 3.5 years.
I had a flare 5 months ago, had to increase prednisone to 35 mg to get it under control. Now down to 25 mg and can’t get it lower without flare, and my (new) rheumatologist has prescribed methotrexate, which I will start this week, along with increasing my dose of Actemra. I am hoping the methotrexate dose (15 mg/week) will not be high enough to cause significant side effects.

I hope we will get some responses on this. I will post my experience when I have more information.

It’s been 8 months since my Feb 26th post. Here is the update I said I would give (after seeing a recent “helpful” tag on my Feb post).
Since March, I have added 15 mg methotrexate weekly,
Increased dose of monthly Actemra infusions to 8 mg/kg (up from 6 mg) and tapering prednisone, from 20 mg in March, now at 2 mg.
I have had no illnesses since going on this regimen, and no significant side effects, (some mouth sores for a month or 2 after starting the Methotrexate). No definite signs of relapse. It’s going well. The plan is to continue prednisone taper (0.5 mg every 2 weeks) until off, then drop the MTX, then decrease Actemra back to 6 mg/kg. Then, hopefully off that too. This is if all goes well of course. I was hoping I would be sleeping better after getting prednisone down this low, but that is still a problem many nights.
I’ll post again when there is anything helpful to report.

Thank-you for the update.

Actemra infusions allow for dose adjustments. The injections are a "fixed dose" and only the time interval between injections can be adjusted.

Question: Does your doctor think MTX is needed? My rheumatologist debated on starting me on MTX to prevent anti-drug antibody formation which could decrease Actemra's efficacy.
https://academic.oup.com/rheumatology/article-abstract/55/2/210/1822054?redirectedFrom=fulltext
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Since 2 mg of Prednisone should be a low enough dose to check your cortisol level ... is this being considered? There isn't much that can be done for a low cortisol level but it does provide some information about when it might be safe to discontinue Prednisone.

Dad cue, Thanks for the response, I know you are very well versed in this subject!
I didn’t include in my recent post, the history (in the Feb post) that preceded the decision to add MTX and increase Actemra dose. Relapsed on Actemra and prednisone, 2 mg) a year ago, had to increase to 35 mg prednisone to relieve symptoms.
I did approach my new rheumatologist (first appt with her) about checking for antibodies to Actemra…. She was not sure how available that testing was, and it was not pursued. The MTX was started to help control the GCA is my understanding, no discussion about it helping to prevent antibodies to Actemra, which I was unaware of. I always learn something from your posts!
Cortisol…. I did ask about checking the level, maybe D/C the prednisone based on the results. She wants me to continue the taper instead. I may ask again for a cortisol level in a month. Would be nice to know. I’m a retired medical lab scientist, love lab data!