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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?
Replies to "I've been on 5mg prednisone for over 12 years now and have tried several times to..."
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.
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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.