Kevzara
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.
I did not take a biologic. So I am not sure. I would say if your insurance covers it and your Dr approves then it might help. They probably need to check your liver function tests. As with any drug there are potential side effects. They all have them. But I agree its worth getting off the prednisone. My understanding is they can take up to 6 weeks to start working. So as you said patience. You dont mention your ESR and CRP. If those are still elevated 6 months is a very short time to burn out the PMR. If those are still elevated you might have trouble at the 10-11mg range. If they are not elevated then its possible to wean down off the prednisone. I was off in 6 months. Remember the Kevzara is to keep your PMR from flaring up while tapering down on your prednisone. Kevzara does nothing for the lack of cortisol. That is the pain associated with a prednisone taper. Good luck
My PMR began in January of 2022. In April of 2024 I was trying to taper off Prednisone for the second time when the PMR symptoms returned. My Rheumatologist suggested I try Kevzara. It took some time for insurance company approval but I now have taken 7 dosages (200 mg/1.14 ml every two weeks). I'm down to 3 mg of Prednisone and feel the best I have since the PMR started. During the previous two tapers the symptoms would return when I reached a Prednisone dosage of between 5 - 7 mg. I have had no side effects from the Kevzara. I had an appointment with the Rheumatologist this past week and he said all signs of the inflammation are gone. He expects I will need to remain on the Kevara for 12-18 months. My Sed rate and CRP which had reached highs of 80 and 6 are now less than one and 0.03 respectively. Kevara has worked great for me so far.
Welcome to the PMR group!
You will find a lot of very knowledgeable group of people to help you here in your journey if needed.
Sounds like you are on the right track with your PMR with the addition of Kevzara to your regimen!
Congratulations and keep up the good work, so happy for you.
Hi, I have been on Kevzara about a year. I think it is working but tappering off Predisone has proved difficult. Ideally I should not need Predisone any longer. So, you right to be concerned with staying on steroid for any longer then necessary. I’m am not sure whether I am dealing with Predisone withdrawal or cortisol insufficiency. If you begin Kevzara, don’t take your eye tapering. When I think about it, the tapering , because of the duration on steroids, causes me more discomfort and debilitation then anything else these days and it will take about a year of this roller coaster to hopefully fully have my adrenals kick back in. Hope this helps. Hang in term, for most of us we should be able to get off all these meds in time 😊
Thankful for Kevzara! The Kevzara targets a different inflammation pathway than the Prednisone. For me, the Kevzara is more powerful than Pred. Defying the predictions, I got relief from Kevzara quickly and dramatically.. I'm still on Prednisone but down to 5 mg. I got down to 3 but I was exercising a lot and had too much pain and stiffness. Diet, a good exercise program and Kevzara/Pred is helping live much more normally. Yesterday I walked 10K steps and it won't take me a month to recover - for the first time in a year! My previous limit was 6K steps. I'll be back at the gym tomorrow!
Oh- absolutely no side effects. Labs are all great.
I have no experience with Kevzara but I have over 15 years of experience with PMR. I don't think it is ever too soon to try Kevzara. The longer a person is on Prednisone the more likely adrenal insufficiency will develop.
I was tried on a different biologic called Actema (tocilizumab) after 12 years of PMR. There was no way I was ever going to taper off Prednisone no matter how slowly I tapered. I told my rheumatologist I wasn't going to try to taper off prednisone anymore. My rheumatologist said lifelong Prednisone wouldn't be a good outcome.
My rheumatologist eventually asked if I was willing to try Actemra, he would try to get it approved for me. Actemra was approved--- I tried Actemra and I was able to taper off Prednisone within one year. It would have taken me less time to taper off Prednisone except for underlying adrenal insufficiency caused by long term Prednisone use.
Both Kevzra and Actemra work on the same inflammation pathway that has been implicated in PMR and GCA. Evidence suggests that PMR and GCA are caused by the pro-inflammatory effects of the IL-6 cytokine. The following link explains it better than I can. There is a tab at the top that says IL-6 and PMR.
https://www.pmrandil6.com/#:~:text=Key%20hallmarks%20associated%20with%20polymyalgia,6%20(IL%2D6).
There are many misconceptions about long term Prednisone use. Taking Prednisone on a long term basis is well documented in medical literature to cause many side effects.
Some of these Prednisone side effects can be permanent and lifelong adrenal insufficiency can happen. There isn't that much in the way of "quality of life" when this happens. I was just lucky that my adrenal function wasn't permanently suppressed. I tapered off Prednisone and have remained off for more than 3 years. I don't have anywhere near the side effects from Actemra as I did from Prednisone.
There are no guarantees that Kevzara or Actemra will work for you but I think these biologics should be tried sooner rather than later.
I agree with Dadcue. Its great that Kevzara works. I think it should be tried as soon as possible in the PMR journey. The idea being it keeps the PMR controlled while trying to taper off steroids. However it does nothing for the cortisol insufficiency created by the prednisone taper. The pain from adrenal insufficiency is almost identical to PMR pain. From my personal experience even being on low dose has eventual side effects. 5mg is about your taper wall. To reduce below that is going to cause some discomfort but I think its worth it to be off the prednisone. Go real slow in your taper. It can take several months after stopping prednisone but life will get better. Keep exercising.
I was one of the first folks on The Forum to go on Kevzara. I was on it from October of last year until February of this year and it worked just great. BUT, one of the known side effects is a lowered WBC and I had to come off. I was initially diagnosed in January of 2023. I am now on meloxacam, a non steroid anti inflammatory. 15 mg daily and at 83 I am just living my life pretty much pain free.
My WBCs decreased temporarily on Actemra too. My rheumatiologist debated about what to do. I think I skipped one injection of Actemra.
My neutrophils were the biggest worry. My percentage of neutrophils was low but my absolute neutrophil count was only borderline. The absolute count is the most important.
WBCs can be expressed as a percentage (relative numbers of each type of WBC in relationship to the total WBC) or as an absolute value (percentage x total WBC). Of these, the absolute value is much more important than the relative value.
There are five basic white blood cell types:
Neutrophils
Eosinophils
Basophils
Lymphocytes
Monocytes
In any case, my rhematologist said I was immunosuppressed but I had a low risk of a serious infection. After a few months on Actemra, my WBCs normalzed.
@wilmingtonemperor
At one point I was put on Meloxicam (“mobic”) for a bad flare of my inflammatory arthritis. I took it with prednisone and a gastric protector, Carafate(I’m very sensitive to NSAIDS).
This combination worked very well with no bad effects on a short term basis.