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.

@aussiedogmom

While Prednisone is known for its dramatic results, I have to say that it's Kevzara that has given me my life back. I had the usual dramatic response to Prednisone then couldn't reduce further. Unlike most folks, my response to Kevzara was immediate and dramatic. Within days, I had less pain and greater mobility. Kevzara targets different receptors than Prednisone, and I believe my PMR is more affected by that pathway. If I'm late with a Kevzara dose, my body reminds me. Meanwhile, I'm dropping to 3 mg of Prednisone this week and expect to be down to 1 and off by summertime. My exercise tolerance is (slowly) increasing, sleep is improved, brain fog from pain is almost gone. I'm much better off by every measure to be on only Kevzara than Kevazara+Prednsone. Can't wait to lose this moonface & weight gain and get back to walking and hiking 3 to 5 miles daily.

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How soon was Kevzara started after you were diagnosed with PMR? My response to Actemra was dramatic but I was on Prednisone for more than 12 years before Actemra was tried. I needed to wait a long time for my cortisol level to improve before I could taper off Prednisone. It took a long time for my adrenal function to rebound after being suppressed for 12 years.

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@dadcue

How soon was Kevzara started after you were diagnosed with PMR? My response to Actemra was dramatic but I was on Prednisone for more than 12 years before Actemra was tried. I needed to wait a long time for my cortisol level to improve before I could taper off Prednisone. It took a long time for my adrenal function to rebound after being suppressed for 12 years.

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A few months. Less than 6. I reached a point where I couldn't reduce the Pred, so we increased back to a good dose, paused and then tried again and that was it - added Kevzara. My rheu.atologists group follows a protocol and most all their PMR patients are off Pred within 2 years.

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@aussiedogmom

A few months. Less than 6. I reached a point where I couldn't reduce the Pred, so we increased back to a good dose, paused and then tried again and that was it - added Kevzara. My rheu.atologists group follows a protocol and most all their PMR patients are off Pred within 2 years.

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My rheumatologists group follows a protocol and most all their PMR patients are off Pred within 2 years.
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I like this protocol.

Five years ago when I tried Actemra, my rheumatologist said I was breaking new ground if he could get Actemra approved for me to treat PMR. At the time, Actemra was only FDA approved for GCA and I didn't have GCA. The reason Actemra was approved for me was mostly because I was unable to taper off Prednisone after 12 years.

In my opinion, the sooner people can get off Prednisone the better. I'm glad people now have Kevzara as an alternative to Prednisone for the treatment of PMR. Kevzara wasn't an option when I was diagnosed with PMR 12 years ago.

Do you live in Australia or I'm guessing you own an Australian Shepherd?

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@rnm

Hi, I was just diagnosed with PMR about two weeks ago. I’ve just started on a low-dose regimen of prednisone, 10 mg daily. After reading some of the posts on this site, I am wondering if I should be considering a biologic I’ve had some lessening of pain on the prednisone already, but I am very fearful of the long-term side effects given what I’ve read in general and what I’ve seen on this group site. Any comments or insights would be most welcome. I feel very frightened having just been given this diagnosis.

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Was diagnosed in July 2024 with PMR and possible GCA. Started on 60 mg of prednisone daily. Couldn't taper below 8-10 mg without a flare and increased joint aches.

I have read other's PMR journey on this site. Many have been on prednisone for years. Prednisone has already caused me other issues- mainly diabetes. Haven't had my bone density checked since I started on prednisone, but I wouldn't be surprised if it were compromised.

I will have my second actemra infusion this Wednesday. I'll get them every 4 weeks. I'm down to 11 mg. a day. I already feel better. More energy and not the general feeling of malaise. I am hopeful that it will help me taper to 0 mg. I was very active before PMR. I'm getting my life back. Good luck!

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@ropnrose

Was diagnosed in July 2024 with PMR and possible GCA. Started on 60 mg of prednisone daily. Couldn't taper below 8-10 mg without a flare and increased joint aches.

I have read other's PMR journey on this site. Many have been on prednisone for years. Prednisone has already caused me other issues- mainly diabetes. Haven't had my bone density checked since I started on prednisone, but I wouldn't be surprised if it were compromised.

I will have my second actemra infusion this Wednesday. I'll get them every 4 weeks. I'm down to 11 mg. a day. I already feel better. More energy and not the general feeling of malaise. I am hopeful that it will help me taper to 0 mg. I was very active before PMR. I'm getting my life back. Good luck!

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"I'll get them every 4 weeks. I'm down to 11 mg. a day. I already feel better. More energy and not the general feeling of malaise. I am hopeful that it will help me taper to 0 mg. I was very active before PMR. I'm getting my life back."
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If Actemra works for you ... it actually stops the inflammation. Prednisone doesn't do that very well. Prednisone only reduces the inflammation for less than a day and then you need another dose.

I can go an entire month from one Actemra infusion to the next infusion with no discernable increase in inflammation. I have gone 7 weeks between infusions and my inflammation markers were still negligible but they did increase slightly again.

Those prednisone side effects aren't that easy to manage. I took care of patients on long term corticosteroids and they had a lot of problems. They were frequently hospitalized with broken bones and infections.

I once needed surgery for a problem unrelated to my autoimmune conditions. The surgeon told me I was a poor surgical risk because of my long term Prednisone use. I still haven't done that surgery.

An orthopedic surgeon reluctantly agreed to do knee replacement surgery. I couldn't believe all the extra precautions that were needed. I had an endocrinologist assigned to me "just in case." I didn't know who she was but she stopped in to see how I was doing every hour for about 5 hours after my knee replacement surgery. I didn't figure out why she was visiting with me so often until she said it would be okay to discontinue my infusion of hydrocortisone after her last visit. There was an entourage of medical residents and medical students with the endocrinologist. They were being educated by the endocrinologist. I think they were disappointed because I didn't have an adrenal crisis.

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@dadcue

My rheumatologists group follows a protocol and most all their PMR patients are off Pred within 2 years.
----------------
I like this protocol.

Five years ago when I tried Actemra, my rheumatologist said I was breaking new ground if he could get Actemra approved for me to treat PMR. At the time, Actemra was only FDA approved for GCA and I didn't have GCA. The reason Actemra was approved for me was mostly because I was unable to taper off Prednisone after 12 years.

In my opinion, the sooner people can get off Prednisone the better. I'm glad people now have Kevzara as an alternative to Prednisone for the treatment of PMR. Kevzara wasn't an option when I was diagnosed with PMR 12 years ago.

Do you live in Australia or I'm guessing you own an Australian Shepherd?

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Yes, I was very fortunate. Kevzara was US FDA approved the month of my first rheum appointment. My rheum, internal medicine, and endocrinology practices are all within one large practice, affiliated with a medical school. So everyone had a running start when it came to Kevzara. The rheums had their plan and tinelines ready tho.my Internal Med Dr had told me they get folks off Pred within 2 yrs when he referred me, about 6 months prior. Also my rheumatologist is a geriatric rheumatologist, so I've had many times to appreciate that little added bit of his training. He knows more about aging than I do, LOL.

I've owned Australian Shepards for many years.

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@dadcue

How soon was Kevzara started after you were diagnosed with PMR? My response to Actemra was dramatic but I was on Prednisone for more than 12 years before Actemra was tried. I needed to wait a long time for my cortisol level to improve before I could taper off Prednisone. It took a long time for my adrenal function to rebound after being suppressed for 12 years.

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Dadcue, I wasn't treated for PMR until I was diagnosed by the rheumatologist. I thought I had an orthopedic problem, probably from overdoing it. Went to internist. He did tests for inflammatory markers (normal), put me on Rx NSAID. I still hurt. Made appt with orthopedic. Went back for follow up with internist. Internist said it was too emsoon to repeat the blood tests but he was sure the orthopedic would; he suspected a rheumatoid disorder. Orthopedic appt (a week or 2 later) said, "Prepare to meet a rheumatologist," and ordered a repeat inflammatory marker panel. Well those came back high and as soon as the results hit my electronic record, I got a call from the internist to come in the next day. He didn't discuss diagnosed but referred me to rheum - 6 month wait. Dr Google gave me a differential diagnosis of PMR vs RA. Orthopedic had referred me to PT to try to keep me moving, IM Dr recommended a trial of anti inflam diet and continue Meloxicam (rx NSAID). 6 mos passed and I was walking thanks to that and a busy schedule at my gym. Rheumatologist dx'd PMR 1st visit (he had new lab results), began Pred @15 mg. That was Nov. Started Kevzara around March of last year.

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