Hello, earlier this past summer I posted that I got off hydrocortisone and back on prednisone. I started at 5mg prednisone a dose that had for years been enough to keep my symptoms at bay. This wasn’t enough so my new rheumatologist put me to 7.5. Sloley but methodically the inflammation increased and my markers went up. MyCRP was 17 , my normal is less than <3 so she put me on 20 mg for two weeks to see if this would knock the inflammation. If so a biologic, Kevzara would be use . I had tried 10 mg for a couple weeks before but no results. Well the 20mg did smash the inflammation. So I am now on a trek to 10mg in a couple months. Reducing 2.5m every two weeks. I the inflammation returns then Kevzara . The Kevzara has some serious side effects, especially those with a history of diverticulitis , of which I have had. After my last bout a few years ago I had a consult with a colorectal surgeon.
Two other issues have crept their way in . This summer I have been bothered with PVC’s . I first was bothered with them 30 years ago. I went to Mayo Clinic in September for an annual check up and was put on a 30 day holter monitor. Results are in but waiting for a call this week for recommendations. Also last December I had a surgery for a small anal fistula. It healed well, but I think it has returned, so Friday morning I sent an email ago my dr. At the University of Chicago and now I have an appointment on November 11th with the colorectal surgeon that worked on me last December.
It’s been a long time , 10 years , that I’ve been on a higher dose . Sleepless nights,like tonight have been common . My wife is at the brunt of my short fuse. I
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1951grumpa
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I'm not on Kevzara but Actemra - which also works on the IL-6 cytokine and can also be a problem with diverticulitis. I have had no problems in over 2 1/2 years but I have never had a history of GI problems.
There are a couple of people on the forum on Actemra for GCA who had had diverticulitis and their responses to Actemra were very different. SheffieldJane had problems and had to discontinue Actemra, Grammy80 had had a different story.
There aren't many here on Kevzara - still a recent introduction and not approved in the UK. But perhaps someone else will reply. Actemra got me from nearly 20mg pred to 7mg and I am just about stable there,
Thanks for your thoughts. Here in the US I think only Kevzara has been approved for PMR. Actemra is approved for GCA. I wasn’t aware that Actemra had similar side effects, thank you.. I see a surgeon next Monday and I’ll ask her opinion and December 2nd I see my GI dr. and get his thoughts. I am not a hundred opposed to Kevzara just have some concerns because a few years ago when I saw a different colorectal surgeon after two bouts with diverticulitis he was cautious of surgery because of the high number of divertucli I have….Geo
Then it is definitely worth including your GI people in the decision. Just because it is available doesn't mean it should be used and to be honest, in your place I would want to try a MUCH slower taper of the pred because 5mg a month, even split as you are doing, is incredibly fast and likely to result in a flare of symptoms, 2.5mg a month is a more reasonable approach down to 10mg, 1mg a month thereafter. It can take longer than 2 weeks to be sure that the new dose is still enough to manage the inflammation. Most people can manage that even without Kevzara - after all, it's what most of us have had to do! It might be faster - but only while you are taking it as long as the underlying autoimmune condition that causes the PMR symptoms is still active. That may be a few years.
You aren't heading relentlessly to zero now you have relieved the inflammatory symptoms. The next step is to taper slowly in a process called titration to identify the lowest effective dose, the lowest dose that gives the same symptom relief as the starting dose did. This is the dose that clears out each day's new batch of inflammation due to inflammatory substances shed in the body in the early morning.
The 10mg you tried first wasn't enough when there was a lot of accumulated inflammation in soft-tissues and around joints - only once you have springcleaned can you go back to daily dusting! But for most people a daily dose well under 10mg is achievable PROVIDING they taper sensibly and never allow a flare due to overshooting the dose you need to get established. You need enough pred - take even slightly too low a dose and the left-over inflammation will slowly build up like a dripping tap fills a bucket until you are back where you started. But it is very doable.
Thank your for your advice. The 2.5mg/month is what my rheumatologist suggested, I wanted to speed it up, and she agreed but if there was any pain/inflammation I was to contact her. So I am now stretch the 2.5mg to a month at a time. It’s been 10/11 years since 20mg prednisone. My inflammation bucket you referred to, definitely overflowed this past year… So at the slower rate , 2.5/month ,I will be at the 10mg she wants me to be by the end of March. Thanks again PMRpro, your advice is greatly appreciated.. Geo.
Sensible lady - but if you try to rush it, the only winner is PMR. It always wins. And in the end it takes you longer and you have taken more pred than going "slowly" - because it isn't slow when it works.
Grammy here....I've been on Actemra since 2019. My previous medical history included two bad bouts with diverticulitis so they were hesitant to put me on it; prednisone was not quieting my GCA. I had absolutely NO side effects at all. My feeling was if I did, I could stop it. Pred and Actemra did bring my inflammation levels down...though my case is an atypical roller coaster ride, I believe. Just recently, I was back to 60mg per day after getting to zero. I've been told now, and there is no zero for me. (I went undiagnosed for about a year, lost sight, and developed optic neuritis in my good eye)
I'd say give it a go.....if you have an issue, you can stop it. (You do have to stop Actemra if you develop any infection so your body can better fight it...but then pick it up again) I wish you the best, 💞
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