Anyone tried Kevzara for PMR?
I am 72 yo dx with PMR 1 1/2 years ago on Prednisone for treatment. It helped but threw me into diabetes! Since then wanted to get off Pred and went down 1mg per 2weeks. Finally off on March but symptoms so much worse. Tried 3 different prescription nsaids and not helping( but off diabetes meds!!) Anyone tried Kevzara? My family Doc told me to ask Rheumatologist about this med.
Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
I've been on 5mg prednisone for over 12 years now and have tried several times to go off but can't. I now have GCA as well as PMR so it's not just the pain and stiffness, but also fear of blindness that keeps me on it. However, the side effects of prednisone are creeping in and I'm desperate! I'm starting Kevzara injections tomorrow, but all the side effects listed scare me. Any experience with it out there?
The side effects can scare you. Someone posted this video of Dr. Megan. No matter what you think of her she is a Dr of pharmacy and knows her prednisone. If you watch this video I would drag over to 29 minutes to answer your question. The whole video is about an hour and drags on a bit. Her opinion is whatever you take is less harmful than prednisone.
Hello @froggyone, I would like to add my welcome to Connect along with @tuckerp and others. You will notice that we merged your post into an existing discussion on the same topic here:
-- Anyone tried Kevzara for PMR?: https://connect.mayoclinic.org/discussion/kevzara-3/
If you click the link above it will take you to the beginning of the discussion where you can learn what others have shared. The Dr. Megan video referenced by @tuckerp can be viewed in a post by @dadcue here - https://connect.mayoclinic.org/comment/1201428/.
I was on Kevzara for 8 months, until Jan. '25. I have been on prednisone for PMR for 3 1/2 years, though I also have had some GCA symptoms all along and that diagnosis has recently been added. I have no elevation of inflammation markers since I've been on prednisone. The Kevzara allowed me to feel better but only drop 1.5 mg on the prednisone, from 6.5 to 5 mg. I couldn't get below 5 and then I was cut off patient assistance from the drug company at the end of the year and could no longer afford it. I'm glad the decision was made for me because I had some worrying side effects on the Kevzara. My cholesterol and LDL went up 50 points and my rheumatologist thought I should go on a statin. That would mean adding a drug and more side effects. Also my white blood cells and neutrophils dropped below normal, indicating that my immune system was being suppressed too much and I was at risk for infections, though I have not gotten any. My rheumatologist has offered to get me on Actemra with the assumption that I also have GCA but I decided to wait and try to get my labs back to normal and see how low I can get the prednisone. Also, I would have to do some research on cost for the Actemra. I don't regret going on the Kevzara. I'm thinking the side effects will be reversible. I am open to trying the Actemra, a similar drug, but will do so with caution.
cholesterol, blood sugar, immune system, bone density, weight gain, muscle strength, eyes, gastric issues are all part of long term prednisone use. It could be the steroids.
I had been on prednisone for 3 years without those lab changes and they occurred after I started the Kevzara. I watch my labs carefully. The cholesterol dropped 40 points 6 weeks after I quit the Kevzara but has not yet gone all the way back down to where it was. White cells and neutrophils were never abnormal on prednisone until I started Kevzara. They have not gone back up yet but I'm hopeful they will be back up at my next lab draw. I know that there is a lot of hopefulness about the biologics, that they will be game changers for PMR and GCA, but they are just another drug option with their own side effects and different results with different people. There is no free lunch when it comes to drugs!
Exactly ... people love to blame one thing and not hold something else accountable. More often than not it is a combination of things that have a cumulative effect. It isn't usually one medication and not the other.
PMR contributes to the cumulative effects because it involves lifestyle changes. Diet, exercise, and the stress of being unwell all contribute to the adverse effects that we experience.
Plus, we all have different responses to medications. I'm on Actemra and my cholesterol level decreased especially after stopping Prednisone. I had to stop my statin because my cholesterol level was getting too low. When the statin was stopped my cholesterol level increased again. Now I'm on a lower dose of "weaker cholesterol medication" called Ezetimibe (Zetia) that works differently when compared to statins.
https://www.drugs.com/medical-answers/zetia-statin-3554184/
Some far on Zetia my cholesterol level is neither too high or too low. and is just right. My endocrinologist recommended Zetia.
I started Kevzara a week ago no better maybe worse. I know it can take 2 weeks to help so I am staying the line.🙏
I had my 1st shot yesterday and had terrible chills and body aches all night...still pretty miserable!
I have had six shots so far feel great. No side effects. It can take up to 12 weeks or longer to get in your system. Others in the thread have felt relief around shot 15. I am hopeful