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Benlysta helped for awhile, but I developed difficult gastro issues. Has anyone else developed side effects after taking the med for awhile. My worst flare symptom is extreme fatigue and joint pain, along with rashes. I know everyone is unique in their symptoms, but if you've had a similar experience, please share your thoughts. Thank you!
Mia, it sounds like you are dealing with a lot. I'm glad you've found meds that help. Sending hugs.
Praying for you Connie. God bless. I did prednisone for a minute but it is of little use for me as I have End Stage Lung disease and it ran my sugars sky high and interacted with OFEV so I cannot take it anymore. I am ok on Plaquniel, OFEV and Myfortic as Myfortic has been helping with my lungs.
Are you already on hydroxychloroquine, Connie, or were you unable to tolerate it? I can't personally comment on Benlysta as I've not been on it, but most seem to tolerate it, and it's too bad that you did not. I have been on a very low dose of prednisone, but my lupus is severe with organ involvement. For those with milder disease, it's definitely best to avoid it.
Alternatives to ask your doctor about for mild symptoms like yours include Saphnelo and azathioprine.
I'm currently doing saphenelo infusions, hydroxychloriquin,cellcept an immunosuppressant since I refuse to go back down the Prednisone road again ever. What a horrible drug at any dose. This regimen I'm on seems to be working for me. Also another horrible med is gabapentin:(
Has anyone experienced success with low-dose prednisone for lupus flares after stopping Benlysta?
You're experiencing common withdrawal symptoms after stopping Benlysta. A MyLupusTeam member shared: "I was taking regular monthly Benlysta infusions and doing well. About six months ago, I decided to stop them to see if it made Show Full Answer
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