Prednisone to Kevzara

Posted by pkm1 @pkm1, May 10 8:14am

I am 69 and very active. I loved to play golf but have been unable since onset of PmR. My PMR was diagnosed a year ago after suffering joint pain that started 1-2 weeks after Covid vaccination (booster). Sudden onset. 2 Rheumatologists later, I took Prednisone 20mg for a nasty sinus infection and pain went away, so PMR diagnosis. Started on 20 mg and have tried for a year to taper off. Unsuccessful. Now Dr says I have to get off Prednisone and wants me to try Kevzara. While waiting for Rx approval. I cut Prednisone to 15 and so far have had less pain. Plan to drop again and see what happens. I have a couple of questions for you guys. 1. Does anyone else suffer with bowel incontinence as well (sudden uncontrollable poops-). 2. Is Kevzara a good idea. Trying to retire and concerned about cost and duration. Would appreciate any input.

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wilmingtonemperor | @wilmingtonemperor | May 11 8:45am

So I was on Kevzara from October of last year until February of this year. Did it work? You bet. Unfortunately I had to come off because it affected my white count, a known side effect. I am retired military and so my cost was not a big consideration. It is easy to administer with the injector pen.
Good luck.

alissahe | @alissahe | May 12 6:50am

I’ve been dealing with my nhi to try to get approved for Kevzara but truth is I’m not even sure I want to take it. I’m at 10 mg prednisone right now on a very slow taper. I have some side effects but sometimes the devil you know is better than the devil you don’t know.

trina24 | @trina24 | May 12 10:21am

Never heard of Kevezra what is it pill or infusion. I could not take Predisone.

hopeinal | @hopeinal | May 13 9:22am

To answer your first question: YES! I have been on Prednisone for about 18 months and am having a problem with sudden explosive diarrhea. I'm honestly afraid to leave the house. Trying to taper pred and praying that will resolve the problem.

DadCue | @dadcue | May 14 3:07pm

In reply to @alissahe "I’ve been dealing with my nhi to try to get approved for Kevzara but truth is..." + (show)

I heard the same devil comment about Actemra on another forum. I was almost dissuaded from trying Actemra. The only people who said the Prednisone devil I knew was better than the Actemra devil I didn't know had absolutely no personal experience with taking any biologic.

My rheumatologist said I wouldn't know if the Actemra devil was any better than Prednisone unless I tried Actemra to see how it worked. I'm glad I listened to my rheumatologist. Actemra wasn't a devil at all. The only devil was Prednisone based on my personal experience.

Biologics can be a devil for some people ... just like Prednisone. Most people don't report too many problems which doesn't seem true for Prednisone. I have been on Actemra for more than 4 years without any serious problems. My only serious problems were during my 12 years of taking prednisone. Your experience may vary but you won't know unless you try Kevzara.

DadCue | @dadcue | May 14 3:17pm

In reply to @trina24 "Never heard of Kevezra what is it pill or infusion. I could not take Predisone." + (show)

Kevzara is neither a pill or an infusion. Kevzara is an injection under the skin.

DadCue | @dadcue | May 14 3:53pm

In reply to @wilmingtonemperor "So I was on Kevzara from October of last year until February of this year. Did..." + (show)

Are you permanently off Kevzara without any relapses? I had a slightly low white count on Actemra but it wasn't deemed to be significant and it resolved on its own. I also had slightly elevated liver enzymes but that wasn't anything new. I was referred to a liver specialist who said my elevated liver enzymes were likely caused by nonalcoholic fatty liver disease (NAFLD). I didn't have to stop Actemra.

I'm interested in getting off Actemra but my rheumatologist doesn't think it is a good idea just yet. I am doing a bit of a test and waiting 7 weeks from one infusion to the next. I'm at week 5 and doing well so maybe I will be able to discontinue Actemra. I have Prednisone available just in case.

trina24 | @trina24 | May 14 4:28pm

I have been on Actemra for 5 months. It does help. I asked my Doctor how long I would have to be on it. She said 2 or 3 yrs , which I did not like but it does help. I cannot take Predisone. Theresa

wilmingtonemperor | @wilmingtonemperor | May 14 4:43pm

In reply to @dadcue "Are you permanently off Kevzara without any relapses? I had a slightly low white count on..." + (show)

So Mike, yes I am off permanently. Saw the hematologist today and my white blood count is now back in the normal range. It was a great bridge coming off prednisone and I knew the possible side effects. I would do it again.
Regards, John

DadCue | @dadcue | May 15 1:39am

In reply to @wilmingtonemperor "So Mike, yes I am off permanently. Saw the hematologist today and my white blood count..." + (show)

No relapse?? I had some unplanned "interruptions" of Actemra but I relapsed. My symptoms went away again after Actemra was restarted but I needed some Prednisone in the interim. I was able to quickly taper off Prednisone again after Actemra was restarted.

My current 7-week test is more of an interruption because I'm in Spain and soon will be going to Greece. I haven't been in these countries since my military days about 50 years ago.