Kevzara and Prednisone Tapering before and during Kevzara

I'd only been on prednisone about 2 months. Due to A-Flutter my heart doctor wanted me off prednisone ASAP. So I was anxious to get on the Kevzara.

VERY similar story here! I finally gave in and am glad I did. Aside from a little bit more bruising I've had no side effects. I'm down to 2.5 mg and doing fine.
I have an occasional day of feeling crappy but mostly I have energy back and pain is diminished a lot!

"Frankly the list of side affects scares the heck out of me, and I’m wondering if you felt the same way but chose to go on it anyway."
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I'm just wondering what side effects of Kevzara are so frightening to you? I don't wish to downplay any side effects because they do exist.

I have been on Actemra for more than 6 years with hardly any side effects compared to Prednisone side effects. I was reluctant to start Actemra because nobody knew anything about it. It was relatively new treatment for PMR/GCA at the time when I started Actemra. There was fear mongering about the side effects on another PMR forum from people who had no personal experience with taking Actemra. These same people downplayed all the Prednisone side effects which I had already experienced.

I almost refused Actemra after my rheumatologist went to all the trouble of getting it approved for me. However, I made a commitment to my rheumatologist that I would be willing to try Actemra if it was approved.

Rather than confirm or deny the "potential" side effects from Actemra, my doctor just said I wouldn't know if Actemra would work or not unless I tried it. That seemed logical to me instead of fearing the unknown. My doctor also said I could easily stop Actemra if I experienced side effects.

The only thing that bothered me was when my doctor wanted me to do injections every 2 weeks instead of weekly. My doctor said he wanted to "play it safe" with less frequent injections.

I'm glad I overcame all my fears. Actemra works well for me with almost no side effects. More importantly ... I was able to taper off Prednisone for the first time in 12 years.

I was on Kevzara for 8 months for PMR. It did help PMR symptoms but didn't allow me to reduce the prednisone below 5MG. The side effects I had were cholesterol going up 50 points and white cells dropping to below normal. I had to get off the drug due to cost and the cholesterol and white cell counts went back to normal within a few months. I was offered Actemra by my doctor and hesitated since it is a similar drug and I thought the side effects might be the same. My primary care doctor encouraged me to go on Actemra, telling me that the cholesterol rise I had was not bad enough for me to need a statin and I would probably not be on the drug that long, so I am now on Actemra.

So glad to hear that @navymom154 ! Sounds encouraging!

Boxed warning
Kevzara carries a boxed warning from the FDA, indicating a risk of serious and potentially life-threatening infections. These infections can include bacterial, viral, or fungal infections, and some cases have been fatal.
Other serious side effects
Blood disorders: Kevzara can lead to neutropenia (low white blood cell count) and thrombocytopenia (low platelet count), which can increase the risk of infections or bleeding.
Gastrointestinal perforation: Tears in the stomach or intestine can occur, especially in individuals with diverticulitis or those taking NSAIDs or corticosteroids.
Cancer: Kevzara may increase the risk of certain cancers, such as lymphoma or skin cancer.
Allergic reactions: Serious allergic reactions, including anaphylaxis, can occur, and some cases have required hospitalization.
Liver problems: Kevzara can elevate liver enzymes, potentially indicating liver damage.
Reactivated infections: Kevzara may reactivate latent infections like tuberculosis (TB) or hepatitis B.
Common side effects
This is what I see as the side effects that scare me. I know prednisone comes with side effects as well, but fortunately I have not experienced any, yet I am so hoping to get off it as I know long term use is not a good thing. I just got down to 5mg in June, but as of last week I’m back up to 7 mg, so going in the wrong direction, and still have a lot of discomfort in the mornings. This is why Kevzara has been recommended by my doc and I’m now seriously considering it. I just wanted as much feedback from this group as possible before making my decision.
Thanks to all who are willing to share their experiences!

Thanks @linda7 ! This is good feedback for me, so thank you. I really hope the actemra works for you. I’m even less familiar with that drug than Kevzara so no feedback there for you. Let us know how it’s going once you’ve been on it for a bit. All the best!

Actemra also has a boxed warning from the FDA and the wording is almost identical to the boxed warning for Kevzara.

After 12 years on Prednisone, I felt like there wasn't much that could happen that didn't already happen to me when I took Prednisone. I was at rock bottom and I felt like there wasn't much for me to lose by trying Actemra.

I worry that patients aren't adequately screened for pre-existing conditions before starting these biologics. My rheumatologist asked me about diverticulitis, tuberculosis (TB), and other health problems and thoroughly reviewed my medical records.

My biggest worry was that I might never get off prednisone because of permanent adrenal insufficiency. I raised this concern to my doctor and the response was that Actemra represented my best hope of ever getting off Prednisone.

After Actemra was started, I had some mild neutropenia which was new but that was transient. My other lab abnormalities were all present when I was on Prednisone so nothing new.

What was new was how many of my lab abnormalities improved over time after I was able to taper off Prednisone. I also had some conditions like hypertension, peripheral neuropathy and "metabolic syndrome" which have also improved. Not only did I discontinue Prednisone, at least 5 other medications have also been stopped during the years since I discontinued Prednisone. These other medications were mostly treating Prednisone side effects.

I’ve taken 3 Kevzara injections spanning 6 weeks. On July 1 I reduced to 4 mg Prednisone. At this time, I can’t really say I’m seeing improvements but the literature says it can take up to 12 weeks to become effective.

Thanks Mike I appreciate your detailed feedback. The Actemra certainly seems to be a successful route for you. I will be sure to give you an update after my bloodwork next week. Yes, they will be doing their due diligence and testing for TB, etc.