LUpus Patients Understanding and Support
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Benlysta

A few weeks ago I was approved to begin Benlysta therapy. I currently take Azathioprine, Hydroxychloroquine, Losartin (bp) and Tramadol (pain). It seems that my meds are no longer effective, so my Rheumy will start me on Benlysta. Is there anyone currently on Benlysta? If so, does it seem to work for you? Have you experienced side effects? How does it make you feel? I sort of have anxiety about a new treatment, so I want to know as much as I can to help calm my fears. I appreciate your feedback. Thank you!

~CosmoLupie

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With good wishes,

Ros

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I have been on and off Benlysta over the last 6 years. I had to try almost every other therapy before my insurance would approve it and none of those therapies worked. Benlysta worked incredibly well and put me into remission when I was getting infusions every 3 weeks. I was in remission for about 2 1/2 years getting my infusion every three weeks but then my insurance stopped the approval for every 3 weeks and only approved to do it once monthly, I gradually slipped back to not feeling good and needing steroids again to “get by”.

I ultimately went off Benlysta due to an insurance change that made it impossible for me to afford the medication and I went back to heavy use of steroids, solumedrol injections and then tried chemotherapy to get my Lupus under control. None of which worked.

My insurance approved Benlysta again for every 3 weeks (I think it was an oversight by the insurance company) and I went back on 3 months ago and I’m back in remission! Well, as close as I’ve ever been to remission like a few years ago. I still have to get plenty of rest and take care of myself, but I feel as close to being my normal self getting Benlysta.

I haven’t really had any side effects. The day of infusion and for about 24 hours I feel flu-like. Not really sick, just under the weather. I take the day to lay on the couch and rest. Once the next morning comes, I feel completely fine.

I have had a number of infections due to the lowered immune response to the meds but nothing that antibiotics didn’t clear up.

All in all, Benlysta, when I get it as often as what works for me, has been the best medication for addressing my Lupus issues with the least amount of side effects of all the meds used for treating Lupus patients.

Good luck!

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Thank you for responding. I had my first treatment last week and I will be having others every 2 weeks for 2 months, then I will go to once a month for 6 months to see if the treatments work. I truly appreciate you taking the time to share your experience. It gives me hope. I pray you are well.

CosmoLupie

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