Kevzara and Prednisone Tapering before and during Kevzara

Posted by mikeydee @mikeydee, Jul 3, 2023

I recently stated with Kevzara and I am interested in those who are currently on prednisone and Kevzara.
I would like to know...
1. What was your starting dosage of prednisone and how long have your been taking prednisone?
2. What was your daily dose of prednisone before Kevzara?
3. What was your prednisone tapering schedule before starting Kevzara?
4. What was your lowest dosage of prednisone before Kevzara and did you have difficulty dropping below that dose?
5. What is your tapering schedule now that you are on Kevzara?
6. How successful has this schedule been so far and have you had any flare ups?
7. What is your target date for stopping prednisone?
8. What changes have you noticed in your health, aches and energy level since starting Kevzara?
Please feel free to add any more information that might be helpful to those contemplating starting Kevzara or those currently on Kevzara
Thanks
Mike

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Profile picture for Mike @dadcue

There is no taper that is required in order to discontinue Kevzara. The dose of the injections are the same so the dose isn't gradually decreased. Sometimes the interval between injections is increased before stopping Kevzara but the dose stays the same.

I'm doing Actemra infusions. My infusion dose can be adjusted higher or lower but it has never been lowered with the intent of tapering me off Actemra. I currently do the lowest recommended monthly infusion dose of Actemra. There isn't any plan to stop my monthly infusions.

My monthly infusion was abruptly stopped once when supplies of Actemra were limited during Covid. I didn't have a sudden relapse but my symptoms gradually returned after a few months. I wouldn't call it a sudden flare or a relapse. It was more like PMR was still active when treatment with Actemra was stopped so treatment needed to be continued. In the absence of Actemra, I had to take Prednisone again. When Actemra was restarted, I was able to taper off Prednisone again rapidly in a matter of a few weeks rather than years.

I don't know how a person is supposed to differentiate between symptoms of Prednisone withdrawal and symptoms of PMR. The main reason Prednisone is tapered is because of adrenal suppression. Abruptly stopping Prednisone could result in an adrenal crisis. As scary as that sounds it is relatively rare. People usually have symptoms of Prednisone withdrawal before an adrenal crisis occurs.

Overall ... I think I'm fortunate to be able to be treated with Actema indefinitely. I don't have side effects and Actemra works much better that Prednisone ever did. Since I am currently off of Prednisone, my adrenal function has been restored which makes my life much better.

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@dadcue thx so much for the info.
My day is coming……🤞

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Profile picture for tweetypie13 @tweetypie13

@dadcue thx so much for the info.
My day is coming……🤞

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@tweetypie13

I hope Kevzara works for you!

If Kevzara doesn't work or you have side effects from Kevzara it is very easy to stop Kevzara. Other than the expense of Kevzara, there aren't many downsides of trying it to see if Kevzara works or not.

The biggest downside to being treated with long term Prednisone is how difficult it is to taper off prednisone. After you start down the road of long term Prednisone use ... it is very hard to abruptly stop Prednisone. You are pretty much stuck with Prednisone come hell or high water.

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