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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

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tweetypie13 | @tweetypie13 | Sep 28 9:43am
In reply to @dadcue "There is no taper that is required in order to discontinue Kevzara. The dose of the..." + (show)
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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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Mike | @dadcue | Sep 28 11:02am
In reply to @tweetypie13 "@dadcue thx so much for the info. My day is coming……🤞" + (show)
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@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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jfannarbor | @jfannarbor | Nov 4 10:48am

First set back with Kevzara K. I started K last October when I was on 15 mg/day of Prednisone J. Got down to 2.5 with no problem. When I went to 2 mg / day had a slight problem with pain 6 weeks ago. Then 2 weeks ago started 1 mg of P / day, more pain. Pain got severe so was put back on 2.5 mg/day. I am only relating this history to get others comments or stories about reducing P. The plan was to get to zero P.

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Mike | @dadcue | Nov 4 12:41pm
In reply to @jfannarbor "First set back with Kevzara K. I started K last October when I was on 15..." + (show)
Profile picture for jfannarbor @jfannarbor

First set back with Kevzara K. I started K last October when I was on 15 mg/day of Prednisone J. Got down to 2.5 with no problem. When I went to 2 mg / day had a slight problem with pain 6 weeks ago. Then 2 weeks ago started 1 mg of P / day, more pain. Pain got severe so was put back on 2.5 mg/day. I am only relating this history to get others comments or stories about reducing P. The plan was to get to zero P.

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Maybe if you could describe the pain relative to when you were first diagnosed. How well you can describe "pain" is very important at this stage. All pain is not the same and there are many reasons why we experience pain.

When I on Actemra and successfully tapered off Prednisone, it wasn't a straight path to zero. When I got close to zero .. I frequently oscillated between 1 and 3 mg.

When I actually went to zero the first time--I only stayed on zero for about 2 weeks before my ophthalmologist urgently restarted 60 mg of prednisone again. I consider that to be a "set back" ---- I won't go into details but the reason for restarting 60 mg had nothing to do with PMR or GCA.

When I was eventually successful at staying on zero Prednisone ... an endocrinologist said I should restart Prednisone for "any reason" if I felt the need, The endocrinologist said she didn't know what would happen after I stopped taking prednisone since I took Prednisone for more thaan 12 years for PMR. My adrenal function wasn't so good after that amount of time. I can safely say that a low cortisol level involves some pain too.

What I needed to relearn was that the concept of "no pain" is NOT very realistic. Pain is what "protects us" from harm! However severe pain is never so good.

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jfannarbor | @jfannarbor | Nov 4 1:22pm

When I was on 15 mg of prednisone (P) I had no pain. When I was first diagnoses with PMR maybe 35 years ago I gave the rheumatologist a text book definition of PMR even though I had no idea what PMR was. Bilateral pain across my shoulder girdle and hip girdle for no reason and fatigue. The pain I have now with 1 mg / day P and Kevzara is severe bilateral muscle pain in upper arms and legs for no reason. Maybe some fatigue.

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Mike | @dadcue | Nov 4 2:25pm
In reply to @jfannarbor "When I was on 15 mg of prednisone (P) I had no pain. When I was..." + (show)
Profile picture for jfannarbor @jfannarbor

When I was on 15 mg of prednisone (P) I had no pain. When I was first diagnoses with PMR maybe 35 years ago I gave the rheumatologist a text book definition of PMR even though I had no idea what PMR was. Bilateral pain across my shoulder girdle and hip girdle for no reason and fatigue. The pain I have now with 1 mg / day P and Kevzara is severe bilateral muscle pain in upper arms and legs for no reason. Maybe some fatigue.

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@jfannarbor

35 years is a long time for PMR.

Prednisone was a big part of my life for about 30 years but I was too young for PMR when the pain first started. I have multiple autoimmune conditions but PMR was only added to the list about 15 years ago.

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tweetypie13 | @tweetypie13 | Nov 4 3:25pm
In reply to @jfannarbor "When I was on 15 mg of prednisone (P) I had no pain. When I was..." + (show)
Profile picture for jfannarbor @jfannarbor

When I was on 15 mg of prednisone (P) I had no pain. When I was first diagnoses with PMR maybe 35 years ago I gave the rheumatologist a text book definition of PMR even though I had no idea what PMR was. Bilateral pain across my shoulder girdle and hip girdle for no reason and fatigue. The pain I have now with 1 mg / day P and Kevzara is severe bilateral muscle pain in upper arms and legs for no reason. Maybe some fatigue.

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@jfannarbor
Try and supplement with Tylenol for Arthritis. (My Dr suggEstes)

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jfannarbor | @jfannarbor | Nov 5 8:39am
In reply to @tweetypie13 "@jfannarbor Try and supplement with Tylenol for Arthritis. (My Dr suggEstes)" + (show)
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@jfannarbor
Try and supplement with Tylenol for Arthritis. (My Dr suggEstes)

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@tweetypie13 I have been on Tylenol 1000 mg 2x/d sometimes 3x/d. I discovered T when I had a tooth extracted about a 15 months ago. Worked for tooth pain and PMR.

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marmille | @marmille | Nov 5 10:50am
In reply to @jfannarbor "First set back with Kevzara K. I started K last October when I was on 15..." + (show)
Profile picture for jfannarbor @jfannarbor

First set back with Kevzara K. I started K last October when I was on 15 mg/day of Prednisone J. Got down to 2.5 with no problem. When I went to 2 mg / day had a slight problem with pain 6 weeks ago. Then 2 weeks ago started 1 mg of P / day, more pain. Pain got severe so was put back on 2.5 mg/day. I am only relating this history to get others comments or stories about reducing P. The plan was to get to zero P.

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@jfannarbor our time line is close. I started Kevzara January. I am down to 1mg as of two days ago. So far so good. That being said I continue to have a little tingy pain in back of arms. But I know my limits so not enough for me to increase prednisone

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