Kevzara?

[Khof123]

Does anyone have experience with Kevzara? I'm really struggling with the side effects with prednisone that I've been on for about 6 months. Problems such as frequent sinus infections, at least 3 flares where they have upped prednisone, Covid, and the biggest side effect--diarrhea multiple times(up to 30) a day (This has been going on for over a month and started when they upped prednisone because of sinus infection. I ended up in ER for dehydration from diarrhea and now needing Imodium several times/day)...Family and ER doctor thought diarrhea is from prednisone and recommended looking into biologics with Rheum. since I'm not tolerating prednisone well.

I have an appt. next week with Rheum. and would like to do my homework before visit. Any suggestions or sites I should review? Kevzara is approved in US (where I am located) for PMR so that was where I was starting my search but open to all ideas and suggestions.

Thanks!

[Fatsiajaponica]

Hello there, sorry you are having such troubles. I have no expertise on Kevzara but wanted to ask you whether you are taking omeprazole or similar as a stomach protector? After a while I discovered that my diarrhea was caused by it and not pred. It was debilitating and meant I was unable to leave the house until the afternoon! Hope you get sorted soon, others with knowledge will be along to advise. Good luck.

[Khof123 in reply to Fatsiajaponica]

Thanks for the quick reply! No, I’m not taking any of the proton pump inhibitors.

[PMRpro Ambassador]

Now you have posted you will see a load of Related Posts about Kevzara. It isn;t an option in the UK and the majority of our members are there but we do have quite a few US contributors and a few of them are on Kevzara/sarilumab.

I am on Actemra, also an IL-6 inhibitor that works in a slightly different way, and it got me from nearly 20mg pred to 7mg over a period of about a year. I've been on it for nearly 3 years and had no problems with it. I have a very long-lasting form of PMR that has been difficult to manage.

As already asked - are you SURE it is the pred? What other medications were you given?

However - the biologics can also lead to frequent infections so that may not solve the sinus problem.

And relating to the sinus problem: is your doctor confident this isn't a symptom of a different form of vasculitis called GPA (granulomatosis with polyangiitis) which is sometimes easily confused with GCA/PMR in the early stages bit manifests with sinus problems.

[Khof123 in reply to PMRpro]

Thank you for your quick reply! My immunologist doesn't suspect GCA at this time. I've been working with him for many years due to my chronic sinusitis and controlled asthma so I feel confident in his expertise. I will definitely pursue if the antibiotics don't help the sinus infection.

I'm so glad you asked if I'm sure it's the prednisone because that got me thinking. I had a similar episode several years ago, which also led to an ER visit with dehydration, needing IV fluids, and all tests coming back negative. They never found the cause. I just looked through my health records and realized that the first episode occurred 3-4 weeks after I was prescribed 60 mg of prednisone for an asthma attack, followed by a step-down prednisone regimen. Didn't link the two because I had stopped prednisone before the ER visit and it cleared up after a couple of weeks. I never made the connection until just now. This time it was about a week after they upped my prednisone because of a flare.

[PMRpro Ambassador in reply to Khof123]

Does sound suspicioous.

[SVLady]

I have been on Kevzara since mid July 2024 and began 15mg Prednisone in Mid June. It took about three months of the combo (Kevzara and Pred) before the Kevzara kicked in and once it did I was able to taper down the steroid fairly quickly. I am on 2mg right now with a few aches and pains some days but tolerable. I will taper to 1.5 or 1mg next week for a week or two then try eliminating the Prednisone totally. I have had no side effects from the Kevzara and only the typical ones from the Pred (bruising, hair loss, some weight gain in the hip area). I don't believe Kevzara is usually taken without a steroid as well for the first few months you are on it but I could be wrong. If so, then it would be a while before you could eliminate the Pred totally so it would be great if you could determine what is causing the severe diarrhea which is unusual it seems. Hope you have some relief soon.

[Khof123 in reply to SVLady]

That’s encouraging!

[SnazzyD]

Just a thought, it may be that your infections were due to being immunosuppressed which is the point of Pred. Kevazara also does this, albeit targeting just Interleukin-6. This is why Pred often needs to be taken with it for a time for some and always for others.

Did your diarrhoea coincide with Covid? I had been off Pred for 2 years and got likely the Omicron 5 version which badly affected by intestines and sinuses.

[Khof123 in reply to SnazzyD]

Thanks for your quick reply! No, diarrhea started weeks before testing positive for but I think the Pavlovic Dr prescribed because I was high risk exasperated it.

[Kafkaontheshore]

I’ve been taking Kevzara for two years with no problems. No side effects. Good luck

[Khof123 in reply to Kafkaontheshore]

Thanks for letting me know! That is encouraging!

[Oldies60]

I have been on Kevzara for a few months. It has helped me get off prednisone. I still have some stiffness, but it's bearable. I have had no side effects. I don't think I could have weaned as fast as I did without it.

[Khof123 in reply to Oldies60]

Thanks for the information. Now I just need to get rheumy on board because the GI side effects are doing me in!

[Oldies60 in reply to Khof123]

Good luck!

[1951grumpa]

I started KEVZARA two months ago. So o fdd s r no issues. I was/am cautious though because I read the cautions. But after years, almost 14, and having to increase my prednisone I agreed to o start it. One motivation I had was from my GI dr said a trial from a European country said it worked good for crohns. And mode it acting up a bit. So hopefully it will help out with my PMR. I’ve started prednisone tapering. 1mg/week.

[Khof123 in reply to 1951grumpa]

It sounds like it works pretty well on most people to decrease the prednisone. Fingers crossed!

[DorsetLady PMRGCAuk volunteer in reply to 1951grumpa]

Hope it’s successful for you.

[1951grumpa in reply to DorsetLady]

Thanks, the plan is that when I get to 3 mg I am to get an AM cortisol test to see if I can continue. I’m hoping that will work…. In two weeks we will travel to warm Florida to our Son’s condo for six weeks.. It’s cold here tonight going to 4 degrees. (-16C). I used to work outside a lot. But gladly, not anymore.