1. < Polymyalgia Rheumatica (PMR)
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Temporal Arteritis

Posted by hoosierlarry @hoosierlarry, Jun 23, 2025

Anyone have any experience taking Actemra for Temporal Arteritis. Now on 15 mg Prednisone. Handling Prednisone ok. Lots of exercise.

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Mike | @dadcue | Jun 24, 2025
In reply to @hoosierlarry "Thank you. I’m at 15mg of Pred but just was diagnosed in May. Seems like most..." + (show)
Profile picture for hoosierlarry @hoosierlarry

Thank you. I’m at 15mg of Pred but just was diagnosed in May. Seems like most folks taper down lower before starting the Actemra .
The Prednisone side effects have been minimal once I got lowered from 40 mg to 20 to 15 .
I actually thought that they totally took you off Prednisone once the Actemra started . I’ll ask my doctor about that next Tuesday

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Generally speaking ... the likelihood of prednisone side effects are related to:
1) dose--the higher the dose the more likely you will have side effects.
and
2) duration--the longer you take prednisone the more likely you will have side effects.
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Some say a low dose (under 5 mg/day) taken long term is generally safe. However, there is increasing evidence that long-term and low-dose prednisone use can still have negative effects.
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Actemra works for approximately 50% of GCA patients as defined by sustained remission within a year of starting Actemra. Many people are able to discontinue Prednisone but some are maintained on a much lower dose of Prednisone. What is called the "cumulative dose" of Prednisone over time is significantly less when treated with Actemra. When Actemra works ... it works well with fewer side effects. There are potential side effects from Actemra but generally it is well tolerated when compared with prednisone.

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hoosierlarry | @hoosierlarry | Jun 24, 2025
In reply to @jeff97 "Actually the sooner you start Actemra, the better. It helps you to taper faster and with..." + (show)
Profile picture for jeff97 @jeff97

Actually the sooner you start Actemra, the better. It helps you to taper faster and with fewer flares. I was taking 60 mg a day of prednisone when I started Actemra.

It takes up to 2 months for Actemra to take full effect, so you need to be taking prednisone during that time to control your GCA (or PMR in some cases).

Also, you can't just stop taking prednisone when you start Actemra. Depending on the dose of prednisone and the amount of time you take it, your adrenal glands stop producing cortisol. I think any dose of 10 mg or higher (or maybe even lower) for more than a couple of weeks can shut down the adrenal glands. If you stop taking prednisone all at once, your body will not produce the cortisol you need, and it can make you extremely ill, or even kill you. So you have to slowly taper the dose of prednisone you take to allow your adrenal glands to start working again. For most people the adrenal glands start working again when the prednisone dose gets down to about 5 mg a day or a little lower. I have been tapering prednisone for a whole year to get down to 2 mg per day, and it will take almost 2 more months to get down to no prednisone, and that assumes I don't have a flare or a problem with adrenal insufficiency.

There are a lot of threads on this forum about how to taper prednisone safely so that you don't have a flare of your disease or run into problems with your adrenal glands not making enough cortisol.

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Doctor wanted to start in July but my Blue Cross would t approve until I was on Prednisone for three months.
I’m sure because Prednisone is much cheaper.
They wanted $3000 to start in July and couldn’t confirm that they would not try to not honor any claims for violating start policy.
Right now I have no pain anywhere, am exercising and lifting weight 90 minutes a day , and the only side effect is my blood pressure is running in 130 instead of low 120 /70
I told them I’ll start in August when I’m
In compliance and Blue Cross approves.
Looks like I have a lot of questions for the doctor on
More tapering of the Prednisone.
Thanks again for the info. Very helpful

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hoosierlarry | @hoosierlarry | Jun 24, 2025
In reply to @dadcue "Generally speaking ... the likelihood of prednisone side effects are related to: 1) dose--the higher the..." + (show)
Profile picture for Mike @dadcue

Generally speaking ... the likelihood of prednisone side effects are related to:
1) dose--the higher the dose the more likely you will have side effects.
and
2) duration--the longer you take prednisone the more likely you will have side effects.
--------------------
Some say a low dose (under 5 mg/day) taken long term is generally safe. However, there is increasing evidence that long-term and low-dose prednisone use can still have negative effects.
---------------------
Actemra works for approximately 50% of GCA patients as defined by sustained remission within a year of starting Actemra. Many people are able to discontinue Prednisone but some are maintained on a much lower dose of Prednisone. What is called the "cumulative dose" of Prednisone over time is significantly less when treated with Actemra. When Actemra works ... it works well with fewer side effects. There are potential side effects from Actemra but generally it is well tolerated when compared with prednisone.

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When you say sustained remission, I am guessing that you mean no symptoms or do they do another biopsy to see if the disease is still there???
Ill ask to go to 10 mg from 15 mg since I am not having any real symptoms at 15.

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Mike | @dadcue | Jun 24, 2025
In reply to @hoosierlarry "When you say sustained remission, I am guessing that you mean no symptoms or do they..." + (show)
Profile picture for hoosierlarry @hoosierlarry

When you say sustained remission, I am guessing that you mean no symptoms or do they do another biopsy to see if the disease is still there???
Ill ask to go to 10 mg from 15 mg since I am not having any real symptoms at 15.

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It was the terminology used in the GiACTA study that led to the FDA approval of Actemra for GCA in 2017.

"Remission was defined as absence of flare and normalization of CRP to < 1 mg/dL. A single CRP elevation (≥1 mg/dL) was not considered a flare unless CRP remained elevated (≥1 mg/dL) at the next study visit.

Sustained remission was defined as remission from Week 12 through Week 52 and adherence to the prednisone taper."
https://pubmed.ncbi.nlm.nih.gov/28745999/
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The IV formulation of Actemra was FDA approved for GCA in 2022.
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Long term use of Actemra is promising.
https://pmc.ncbi.nlm.nih.gov/articles/PMC7359771
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I have been doing monthly IV infusions of Actemra for 4 years and I'm still in remission. I haven't had any serious side effects from Actemra. More importantly, I have been off Prednisone and I have mostly recovered from my Prednisone side effects.

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terrib2 | @terrib2 | Jun 25, 2025

This pred tapering info tempts me to self taper rather than wait for my rheumatologist. I’ve had terrible side effects. Started at 60 in March and now at 20 and have had two Actemra infusions. In my opinion prednisone should be dosed out by weight. Normally I don’t take medication and a Tylenol to me is like a pain pill. Have you tapered your pred or was it ordered by your rheumatologist? I may taper to 15 starting tomorrow.
I’ve had no issues with the Actemra. I did notice a week before my second monthly infusion I had more than usual fatigue. The third day after my energy level increased and I felt better.

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hoosierlarry | @hoosierlarry | Jun 25, 2025
In reply to @terrib2 "This pred tapering info tempts me to self taper rather than wait for my rheumatologist. I’ve..." + (show)
Profile picture for terrib2 @terrib2

This pred tapering info tempts me to self taper rather than wait for my rheumatologist. I’ve had terrible side effects. Started at 60 in March and now at 20 and have had two Actemra infusions. In my opinion prednisone should be dosed out by weight. Normally I don’t take medication and a Tylenol to me is like a pain pill. Have you tapered your pred or was it ordered by your rheumatologist? I may taper to 15 starting tomorrow.
I’ve had no issues with the Actemra. I did notice a week before my second monthly infusion I had more than usual fatigue. The third day after my energy level increased and I felt better.

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I was started at 40 mg on mid May and am now at 15 mg . Only side effectes are a little increase in blood pressure to 130'3 and mid 70's, and increase in heart rate faster when exercising.
I am going to tell doctor on July 1 I want to go to 10 mg .
I am not scheduled to start Actemra until August due to Fed Govt Blue Cross insisting I be on Prednisone for three months before they approve Actemra. I refused to pay the $3000 to start in July.

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terrib2 | @terrib2 | Jun 26, 2025

I believe the pred side effects worsen the longer you’re on it. I hope Actemra works well for you. I had to wait for appeal to be approved by my insurance and now I pay $394/mo until I reach max of $3,300. Have no idea how long doctor anticipates duration but is on my question list for next appointment. Best wishes to you on your GCA journey.

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