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Kevzara and Prednisone Tapering before and during Kevzara
I recently stated with Kevzara and I am interested in those who are currently on prednisone and Kevzara.
I would like to know...
1. What was your starting dosage of prednisone and how long have your been taking prednisone?
2. What was your daily dose of prednisone before Kevzara?
3. What was your prednisone tapering schedule before starting Kevzara?
4. What was your lowest dosage of prednisone before Kevzara and did you have difficulty dropping below that dose?
5. What is your tapering schedule now that you are on Kevzara?
6. How successful has this schedule been so far and have you had any flare ups?
7. What is your target date for stopping prednisone?
8. What changes have you noticed in your health, aches and energy level since starting Kevzara?
Please feel free to add any more information that might be helpful to those contemplating starting Kevzara or those currently on Kevzara
Thanks
Mike
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I was on Prednisone for 2 years and I developed adverse side effects. I had uncontrollable weight gain, high blood pressure, and swelling in my legs. I’ve been on Kevzara since February of 2024. YThis last month I had low white blood cell count, low platelet count, and low ANC. I went off Kevzara for 3 weeks and my ANC is back to normal and my white blood cell count and platelet count improved but still low. I have restarted Kevzara so will see what happens.
I found that my blood tests were similar... "low white blood cell count, low platelet count, and low ANC". which i believe is characteristic of kevzara working and tying up the IL6 which causes inflammation.
@mikeydee similar issues….my Dr had me chg injections from bi weekly to every 3 weeks…..maybe try that.
@tweetypie13 I have streched my shots to 19 days and found longer caused increased aches/pain.
@mikeydee bummer….try Tylenol for arthritis as a supplement…..helped me
@mikeydee
Kevzara does tie up IL-6 and reduces the type of inflammation that is the most responsible and implicated in PMR. It might not stop the type of inflammation that is implicated in other autoimmune disorders.
Inflammation gets a bad rap. You wouldn't want to stop any and all inflammation because it is a characteristic of a healthy immune system. Inflammation is our main defense against infections. Fortunately, Kevzara stops PMR inflammation but it doesn't seem to increase the risk of an infection.
Kevzara provides a more targeted relief of PMR inflammation without shutting down the entire immune system. Kevzara works differently ... unlike Prednisone, which broadly suppresses the entire immune system.
The following is a good YouTube video about Kevzara. The Vasculitis Foundation is also a great resource we have in the USA for patients with PMR and GCA.
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2 ReactionsIf you're still experiencing pain on kevzara instead of prednisone, it's because kevzara is only working to relieve the PMR pain. It doesn't do anything for arthritis or other inflammation. I'm tapering down on prednisone and waiting to start kevzara. My rheumatologist put me on LDN when I reached 10mg prednisone to relieve some of the returning arthritis pain and I think it works. I'm sleeping better. It might be worth discussing with your doctor.
1. 40mg/day
2. 30mg/day
3. 5mg/month
4. 30mg/day and No
5. 1mg/week
6. Good, no flares
7. August 31
8. Slight energy loss but rarely
I exercise a lot and push myself hard.
My diet is by choice very strict and started before PMR. Little to no sugar or salt. Vegan except fish and 4 times a year I treat myself to a steak, a burger, pulled pork or ribs. No dairy except plain high protein Greek yogurt and occasional cottage cheese. Lots of vegetables and vegetable protein powder 2x/day.
Also, 3 liters/quarts of water/day.
I have PMR and I had a GCA scare this past weekend with a trip to the ER involved. I watch my salt intake and very seldom add salt to food or eat foods with excessive salt added. I was very surprised to learn that my sodium levels were low in my ER blood workup. I know that prednisone can affect sodium levels but I'm currently on 8mg and I didn't think that was high enough to have a significant effect, but I was proved wrong in either the prednisone effect or my restriction of salt.
@kjoed53
I won't pretend to know what happened but chronic prednisone use can cause a low sodium level due to secondary adrenal insufficiency. It is somewhat of a paradox because normally you would expect an increase in your sodium level when taking prednisone.
https://www.droracle.ai/articles/918961/can-iatrogenic-adrenal-insufficiency-caused-by-long-term-prednisone-therapy
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Prednisone is one of those medications that you never know what can happen. I have only encountered one person who claimed to be "entitled to know everything about PMR and prednisone." Even that person was unable to taper off prednisone but was giving medical advice to other people about how it should be done. According to my rheumatologist, that person was giving "misleading" medical advice on the internet.
What happened in the ER?
All I know was that I had to be very careful when Actemra was started and while I tapered off Prednisone. An endocrinologist said I should "expect the unexpected" when I tapered off Prednisone but that was because I took prednisone daily for 12 years. The endocrinologist didn't even expect that I would be able to taper off prednisone completely and permanently.
The first time I tapered off Prednisone nobody expected what happened but I needed 60 mg again within a week or two after I tapered down to zero. Fortunately that little setback was relatively short and I only needed a few months to get back to zero again. The whole ordeal involved stopping Actemra and switching to a different biologic for 3 months before switching back to Actemra again.