Kevzara

Posted by healthy56 @healthy56, Sep 14, 2024

I am curious about other’s experience with KEVZARA. I am currently taking 11 mg of Prednisone, down from 60 mg in April 2024. I am continuing to experience pain and stiffness daily, especially in the late evening and the morning. I am also fatigued most days. I am on an anti-inflammatory diet, walk daily and do a little restorative yoga. My Rheumatologist suggests going back up to 12.5 mg but I do not think that will be helpful as it will only lengthen the time I am on a drug that appears to not be helpful. She has suggested KEVZARA and we are now waiting on approval from my insurance company. My questions are: should I wait a bit and stay at 11 mg to see if anything changes (I have been on this dose for 4 weeks) before I start KEVZARA? Is it too soon in my treatment to start a biologic? It seems as tho my autoimmune system is not responding to the Prednisone or maybe I need more patience? My doctor was vague on these questions. Thank you in advance, I really appreciate this forum!

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

@dadcue

My rheumatologist said basically the same thing. I thought he had me confused for someone else when he said I was "too young" and "too healthy" to take prednisone for the rest of my life. I was 65 years old but I felt much older --- over 100. I took prednisone for 30 years already but daily for PMR for only 12 years. I didn't think the remaining years of my life would be very long.

Actemra gave me a new lease on life after I was finally able to taper off prednisone. My chronological age is how I currently feel. I'm 70 but getting to 90 seems feasible but 100 might be pushing it. I feel healthier as evidenced by 10 other medications in addition to Prednisone I have also stopped taking. Time will tell but I don't have the steroid burden or PMR anymore as long as I do a monthly Actemra infusion. The following study was funded by Genentech but other studies suggest the duration of PMR/GCA treated with Prednisone is much longer than 2 years.
https://pmc.ncbi.nlm.nih.gov/articles/PMC7991019/
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"The higher-than-anticipated number of patients with continued disease and exposure to glucocorticoids at 2 years suggests a more chronic nature of GCA and PMR in this real-world study rather than the existing expectation that GCA and PMR often resolve within 2 years of therapy. These results highlight the need to consider a potential long-term disease course in patients with GCA and/or PMR and for the use of efficacious, glucocorticoid-sparing therapies in these patients.
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Now my rheumatologist says it is clear that my overall condition is much better on Actemra. The turnaround happened within a year of getting off Prednisone. I had forgotten what it was like to really feel good again and not needing Prednisone every day.

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Reading about your success with Actemra infusions and eliminating prednisone in your life, gives me hope! Just had my second infusion on Wednesday. I started feeling better 2 weeks after the first one. Stepping down to 10 mg. tomorrow.

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@ropnrose

Reading about your success with Actemra infusions and eliminating prednisone in your life, gives me hope! Just had my second infusion on Wednesday. I started feeling better 2 weeks after the first one. Stepping down to 10 mg. tomorrow.

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Actemra has helped me tremendously. It was still a rocky road to finally taper myself completely off Prednisone. Depending on how long you have been on Prednisone ... it might work faster for you.

People say Actemra doesn't help with adrenal insufficiency. I would say it might not help directly but indirectly it does ... without Actemra, I would have never been able to stay on a low enough of a Prednisone dose that would allow my adrenals to recover. I had to stay on 3 mg or less of Prednisone for more than 6 months for my cortisol level to improve. I couldn't get much less than 10 mg without Actemra. Whenever I managed to get to 7 mg ... I flared and had to increase my dose again.

Actemra doesn't suppress my adrenal function so that was a huge benefit. Plus if Actemra doesn't work it can be stopped easily. It is worth a try but no guarantees. Actemra also has some side effects and it is expensive,

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@dadcue

Actemra has helped me tremendously. It was still a rocky road to finally taper myself completely off Prednisone. Depending on how long you have been on Prednisone ... it might work faster for you.

People say Actemra doesn't help with adrenal insufficiency. I would say it might not help directly but indirectly it does ... without Actemra, I would have never been able to stay on a low enough of a Prednisone dose that would allow my adrenals to recover. I had to stay on 3 mg or less of Prednisone for more than 6 months for my cortisol level to improve. I couldn't get much less than 10 mg without Actemra. Whenever I managed to get to 7 mg ... I flared and had to increase my dose again.

Actemra doesn't suppress my adrenal function so that was a huge benefit. Plus if Actemra doesn't work it can be stopped easily. It is worth a try but no guarantees. Actemra also has some side effects and it is expensive,

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I've been on Prednisone since the last week of July 2024. Started with 60 mg. for 6 weeks, due to suspected GCA. When I got to 8 mg. the beginning of December, I had a flare, that set me back to 13 mg. That's when I told my rheumatologist that I wanted to try Actemra.

I am aware of Actemra side effects, but I'm over dealing with the Prednisone side effects. I honestly think that, when I was having headaches, blood sugar spikes (>200) and chest pains over the past few months, it was the Prednisone. I'll take my chances with Actemra. I'm lucky that I have Medicare.

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@aussiedogmom

Also.my situation is a bit unusual. The Rheumatologist (a geriatric rheumatologist)'s practice is part of a hospital system with a medical school. They have a specialty pharmacy that handles all the Kevzara issues - I have a clinical pharmacist assigned to me; he calls me regularly to check on me, and answer questions about Kevzara. They manage the insurance authorizations, arrange delivery of Kevzara to my house, etc.

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I want that :). My hospital is Yale and they don’t have that kind of dedication.

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My original Rheumatologist recommended that I start on Kevzara while I was weaning down off prednisone. The way things worked out is my doctor left her practice for 2 months. I saw another doctor and wasn't happy with her. So I found a new Rheumatologist that told me I didn't need to go on Kevzara, and he weaned me down really slowly off the Prednisone. I'm now off Prednisone for 5 months and in remission. Hope this lasts because I couldn't stand the pain I was in before. My doctor warned me to try to stay healthy and not get sick, which may be impossible because I'm going back to work full time.

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@aussiedogmom

My understanding is that the biologic blocks the effects of the disease while being given but is not a treatment or cure in the usual sense of a drug that directly attacks and terminates the disease process. Thus, we're all in an illustration "remission" while we're on it. I've been told to eventually expect occasions when I'll stop taking it so we can get accurate inflammation markers labs and clinically assess. And yes, long term Kevzara is far preferred over Prednisone from a risk benefit calculation.

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I was first diagnosed with PMR June 2023. I was treated with predisone for 9 mos before starting Kevzara. I am in the "illusory" phase of remission of my PMR while on Kevzara. I've been on it since March 2024 while on Predisone and was able to taper off of the Pred. July 2024. So I've been on Kevzara alone since then(7 mos) . No side effects, and have been mostly symptom free. All of my labs have been normal and I have actually stretched my dosage to every three weeks instead of every two weeks. I've done this in anticipation of coming off of it altogether mostly because of the expense. The drug company said I no longer qualify for their assistance program even though nothing has changed on my end. My rheumatologist says that it's the Kevzara that has kept me in remission and we won't know if it's a real remission until I come off of it. I have enough medication to get me through May and then it's cold turkey for me. Has anyone else discontinued Kevzara after being on it? And if so what was your experience.?

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