Hello Mattsgal,

Hope your day going well! Just sharing personal experience …been on Benlysta for over 5 years. Takes a while to kick in but once it does seems to bring down the noise level of the Lupus and kinda puts things in the background. The reduction of the disease activity does improve quality of life from my experience. Haven’t had any untoward medication effects other than a few issues with the auto-injector itself which were reported to GSK. I like the medication and use it in combination with Myfortic (Mycophenolic Acid), low dose prednisone and avoidance of known triggers. Some like the Benlysta infusion vs the auto-injector and I experienced no difference between the 2. Easier to self manage and stay out of the infusion center…. If this doesn’t work for you there is a new medication which is approved for Lupus called Anifolumab (Saphleno = Brand Name). I have no personal experience here, but offer the info just so you don’t feel like you are at the end of the treatment algorithm. There are lots of possibilities and sometimes lots of trial and retrial to get things livable.

Hope this helps some….

Michael

After I failed methotrexate due to liver issues, I was put on Cellcept (but it gave me REALLY bad gastro), then the acid salt version, Myfortic, which I tolerate fine..
There are a whole lot of other DMARDs available. Talk to your rhuemy about other options..

Hi @A MyLupusTeam Member
I have SLE unspecified, so no nephritis, but musculoskeletal issues that are linked to it and Fibromyalgia. However, my rheumie placed me on CellCept and Benlysta. Why did your doc refuse you this option? The Benlysta is to help slow this process down.
I may have to go off of the CellCept pretty soon as they want to try treating the fibro with low-dose naltrexone. For this you can’t be taking CellCept. However, studies have shown that it has helped with managing pain. We’ll see. I talk to the rheumie tomorrow.
Another infusion to consider would be the one approved last year. It’s called Saphnelo. Benlysta and Saphnelo are the first FDA approved infusion meds specifically designed for the treatment of Lupus. For more info go to: www.Saphnelo.com

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A MyLupus...

Do you take it on an empty stomach? that could have an affect?

Have you tried the generic of plaquenil which is hydroxylchloroquine. You may not be allergic to it.