Questions for people taking Actemra and Kevzara injections

My doctor had to jump through some hoops to get Actemra approved for PMR. The authorization request mentioned being unable to taper off prednisone. The other factor was that all other suitable alternatives had failed … notably methotrexate.

How are you doing on 3mg. Even with Actemra, I had to stay on 3mg for 6 months to allow time for my cortisol level to improve. Actemra prevented a flare of PMR. Otherwise I wouldn’t have been able to stay at 3 mg let alone taper off prednisone.

I just met with my new rheumatologist now that I have GCA as I just got off medication for PMR (2mg Preddie and 2.5 methotrexate) .
My CR-P was 83 but after six days on the megadose of 60 mg. of Prednisone, the number has dropped to seven.
My rheumy recommends the monthly Actemra infusions over the two week self-injection for consistency purposes. He thinks that is more beneficial. If I self-inject it comes out of my pharmacy medicine- a different plan.
I just learned that my GA State Health Benefit Plan with Anthem -Blue Cross Blue Shield (I'm a retired teacher) charges $484.26 monthly for the infusion until I meet my deductible of $3,500. This won't happen by December because I haven't spent much money.
I am now learning that I will start with this deductible cost again in January until I reach $3,500. I won't pay for the remaining months of that year.
I am on a learning curve here because I've had good health until the PMR and now the GCA.
I am going to call State Health in the morning but doubt there is any way to reduce the cost unless I change to some other drug.
I will say that the 60 mg of Prednisone gives me energy and a high but I know it is destroying my body- my "frenemy..."
Every two weeks I will drop 10 mg. of "Preddie" as long as my blood tests look good. This seems what I have been reading here with some of you- same regimen.
Has anyone had success for GCA with another less expensive medication?
Has anyone eventually gotten off Actemra or another medication in time when there is no more inflammation? I seem to remember that if you do, you might have a flare.
Needless to say, I have lots of questions and will also be talking with the nurse tomorrow for answers.
Thank you for your help and input.

I just met with my new rheumatologist now that I have GCA as I just got off medication for PMR (2mg Preddie and 2.5 methotrexate) .
My CR-P was 83 but after six days on the megadose of 60 mg. of Prednisone, the number has dropped to seven.
My rheumy recommends the monthly Actemra infusions over the two week self-injection for consistency purposes. He thinks that is more beneficial. If I self-inject it comes out of my pharmacy medicine- a different plan.
I just learned that my GA State Health Benefit Plan with Anthem -Blue Cross Blue Shield (I'm a retired teacher) charges $484.26 monthly for the infusion until I meet my deductible of $3,500. This won't happen by December because I haven't spent much money.
I am now learning that I will start with this deductible cost again in January until I reach $3,500. I won't pay for the remaining months of that year.
I am on a learning curve here because I've had good health until the PMR and now the GCA.
I am going to call State Health in the morning but doubt there is any way to reduce the cost unless I change to some other drug.
I will say that the 60 mg of Prednisone gives me energy and a high but I know it is destroying my body- my "frenemy..."
Every two weeks I will drop 10 mg. of "Preddie" as long as my blood tests look good. This seems what I have been reading here with some of you- same regimen.
Has anyone had success for GCA with another less expensive medication?
Has anyone eventually gotten off Actemra or another medication in time when there is no more inflammation? I seem to remember that if you do, you might have a flare.
Needless to say, I have lots of questions and will also be talking with the nurse tomorrow for answers.
Thank you for your help and input.

@kathren I have several comments and questions about your post.

I'm surprised that your rheumatologist said Actemra infusions are more consistent than biweekly injections. I take weekly injections. I would think weekly injections are at least as consistent as monthly infusions, if not more so. I'm surprised he didn't mention the option of weekly injections to you. I would think the out of pocket for you would be the same for weekly or biweekly injections, since both would exceed your maximum for the year.

I'm glad to hear you're feeling so good at 60 mg prednisone. I have GCA and PMR, and I had very bad insomnia for the 12 weeks I was above 40 mg of prednisone. I felt like a zombie during the day from not sleeping.

As far as I know, the other drugs for GCA are still very expensive. The only ones I know of are Rinvoq and Tyenne, which is a biosimilar drug to Actemra. Rinvoq is a pill, but it has a lot of potential side effects, and is more expensive than Actemra. Tyenne is cheaper than Actemra, but I think it would still exceed your maximum out of pocket.

I have been taking Actemra for a year, and I expect to keep taking it for at least a couple more years. There is some risk of relapse even when you're taking Actemra, and the risk does go up once you stop taking it. But I am really enjoying the way I feel now that I'm almost finished with prednisone (1 mg per day). I'm feeling much better than I have in several years.

There are financial assistance programs for Actemra that may help with the cost. I don't know how these programs work but there is a number to call in the link below.
https://www.actemra.com/ra/financial-support/assistance-options.html
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I currently do monthly infusions of Actemra. I have also done injections in the past. Either the injections or a monthly infusion should work equally well. I'm not sure what your doctor means by "consistency" of doing infusions. I suppose there are some additional variables to consider with the injections. The timing of my injection wasn't always consistent. I went from an injection every 2 weeks to a weekly injection. One time, I needed to skip a weekly injection because of an abnormal lab value.

I personally like doing a monthly infusion better than the injections. My injections were a "fixed dose" whereas my doctor can adjust my monthly infusion dose as needed.

Actemra is now a "trusted friend" and it has never been my enemy. My friendship with Actemra has lasted more than 6 years.

Prednisone was a good friend in the beginning but our relationship got worse with time. We completely parted ways about 4 years ago. However, my doctor says I should take prednisone with me when I travel.

@kathren I have several comments and questions about your post.

I'm surprised that your rheumatologist said Actemra infusions are more consistent than biweekly injections. I take weekly injections. I would think weekly injections are at least as consistent as monthly infusions, if not more so. I'm surprised he didn't mention the option of weekly injections to you. I would think the out of pocket for you would be the same for weekly or biweekly injections, since both would exceed your maximum for the year.

I'm glad to hear you're feeling so good at 60 mg prednisone. I have GCA and PMR, and I had very bad insomnia for the 12 weeks I was above 40 mg of prednisone. I felt like a zombie during the day from not sleeping.

As far as I know, the other drugs for GCA are still very expensive. The only ones I know of are Rinvoq and Tyenne, which is a biosimilar drug to Actemra. Rinvoq is a pill, but it has a lot of potential side effects, and is more expensive than Actemra. Tyenne is cheaper than Actemra, but I think it would still exceed your maximum out of pocket.

I have been taking Actemra for a year, and I expect to keep taking it for at least a couple more years. There is some risk of relapse even when you're taking Actemra, and the risk does go up once you stop taking it. But I am really enjoying the way I feel now that I'm almost finished with prednisone (1 mg per day). I'm feeling much better than I have in several years.

I have been taking monthly infusions of Actemera for two year for PMR and suspected GCA. I was able to get down to 3 mg of prednisone. I am on Medicare and have BCBS as a supplemental. They would not pay for the weekly injection without it costing 1,700 a month. The infusions are only a 20.00 co pay. Actemera has worked great for me, no pain at all.

Wow! That's a great co-pay and it is great that you are doing so well.
I wonder if rheumatologists bypass that biopsy nowadays since there are these new drugs when GCA is suspected.
Thanks for sharing your situation and experience.