KEVZARA medication reaction

Posted by flower123 @flower123, Aug 24 8:06am

Been on 7 mg of Prednisone for 20 years with success in that it helps me with mobility and pain control. Never been able to lower Prednisone to 3 or 4 mg and tried dozen of times. NOW on KEVZARA
(200) injection every 2 weeks and have after injection #4 experience
canker mouth sores, and disturbance of sleep ( probably insomnia)
lack of energy. Has anyone on this forum experienced this?
Appreciate your input and wish you good health.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Sorry no reaction to Kevzara.
Their website might help and they have an 800 number

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I was on Kevzara in 2024. I did have at least one canker sore and then my dentist thought I had oral thrush as well. Both things cleared up on their own. Now I'm on Actemra and I have acquired several warts on my back and arm. I figure all of these things are due to the drugs suppressing my immune system. As long as it seems minor I just keep an eye on it and report to my rheumatologist when I see him. I have had disturbed sleep and low energy since I've been on prednisone, which is 5 years now. I try not to take drugs for insomnia but once or twice a week I take 2 Tylenol and one Benadryl to help me get back to sleep if I wake up. Glad to hear from someone else who is a "longtimer" on prednisone. I've tried different taper methods, all the drugs offered to me, seen an endocrinologist, and I can't get below 6 mg without significant pain and loss of function. My rheumatologist put a lot of pressure on me for several years to push the taper but now he says that 30-40% of people with PMR are still on prednisone after 5 years. My doctors and I all believe I still have the disease and my symptoms are not mainly or at all due to adrenal insufficiency.

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I have been on Kevzara for 11 months. Initially I did have some fatigue but that ended. No other side effects that I can remember. No longer on prednisone, a great relief.

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Profile picture for cwbf @cwbf

I have been on Kevzara for 11 months. Initially I did have some fatigue but that ended. No other side effects that I can remember. No longer on prednisone, a great relief.

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@cwbf what success. I hope to have the same results. I am now on 6 mg of prednisone and I am in my 2 month of Kevzara injections. How quickly did you reduce your prednisone to get to zero? I am reducing by 1/2 mg per week. Your thoughts would be appreciated.

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I am on Kevzara and am glad to be off Prednisone but have had canker sores pretty steadily (sometimes 3 at once) and the only way I can control them somewhat is with 3000 msg of Lysine per day. It is very annoying and painful.

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Profile picture for lynnfromoro @lynnfromoro

@cwbf what success. I hope to have the same results. I am now on 6 mg of prednisone and I am in my 2 month of Kevzara injections. How quickly did you reduce your prednisone to get to zero? I am reducing by 1/2 mg per week. Your thoughts would be appreciated.

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@lynnfromoro
After I had been on Kevzara for a full 12 weeks--the time and level necessary for Kevzara to reach maximum effectiveness--I reduced prednisone at the rate of 1 mg a week. That taper schedule was suggested by a board certified rheumatologist at Vanderbilt. It worked for me. Seems like you might be starting the taper a little early but at your low rate your body will tell you if it's too soon to taper.

I did experience some back and hip pain but after an MRI those pains turned out to be a result of spinal stenosis and osteoarthritis not PMR. The so called "MILD" back surgery took care of the stenosis and PT and exercise seems to be helping with the arthritic hip pain, which is not debilitating.

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My rheumatologist prescribed 3mg LDN as a bridge from prednisone to kevzara. I started it at 10mg prednisone. My tapering was necessary because of a subsequent SMM diagnosis so it's been faster than most. I've gone from 25mg to 3mg since the beginning of May. I took my 3rd shot of kevzara last Friday. So far only mild to moderate PMR pain that increases with each decrease but resolves before my next decrease.

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Profile picture for cwbf @cwbf

@lynnfromoro
After I had been on Kevzara for a full 12 weeks--the time and level necessary for Kevzara to reach maximum effectiveness--I reduced prednisone at the rate of 1 mg a week. That taper schedule was suggested by a board certified rheumatologist at Vanderbilt. It worked for me. Seems like you might be starting the taper a little early but at your low rate your body will tell you if it's too soon to taper.

I did experience some back and hip pain but after an MRI those pains turned out to be a result of spinal stenosis and osteoarthritis not PMR. The so called "MILD" back surgery took care of the stenosis and PT and exercise seems to be helping with the arthritic hip pain, which is not debilitating.

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@cwbf I am so glad to hear that you didn’t reduce prednisone until you were sure the Kevzara was effective. Being so close to that magic 5 mg of prednisone that seems to cause concerns, I am going to hold off reducing prednisone until I have been on Kevzara for 3 months.
Thanks so much for your response and I hope you can keep all pain in check.

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I got canker sores after starting Kevzara. Taking over the counter remedies for dry mouth helped a lot. Lysine ointment (unflavored) provided the most topical relief. Good luck!

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Yes have experienced all of these symptoms. Im off prednisone completely still experiencing side effects numb hands shoulder and neck pain and insomnia. My Dr. doesn’t understand it’he has no answers im on my own trying to figure this out myself.

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