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Thread: Benlysta questions

  1. #1
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    Question Benlysta questions

    Hi guys,
    I had my rheumy visit last week and he suggested (strongly) that I start Benlysta. He gave me a folder and just some basic information. He told me to go on the web and get information. He wants me to write up a list of questions and when I go in for my Reclast infusion next week we'll sit down and discuss them.
    I can find only general information, you know, just listings of how it's given and side effects and such. I know it's expensive, given monthly by IV after an initial more frequent induction and depresses the immune system. I know everyone reacts differently but I'd like to know if there were side effects, how quickly they appeared and lasted, will I need someone with me for the infusion, can I still eat fresh fruit and veggies and yogurt? I think I could live with anything except vomiting....that just makes me sick!
    I would really appreciate it if anyone with experience with this drug to post a quick (or not) reply.

  2. #2
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    look in the blogs I know someone was writing about their experience with it there. hope you figure out what all you're looking for!
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, InterstitialLung Disease, GERD, Myositis, Vasculitis, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 10mg Norvasc, Nitroglycerin Patch, 20mg Prilosec, 10mg Flexeril, 4mg Medrol, 81mg Asprin.

  3. #3
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    I'm in a drug study with a different lupus drug that isn't available yet, but my rheumy told me that Benlysta works for some people, and not others. It primarily has helped his patients with pain and fatigue. He told me that they weren't seeing any significant side effects in their patients, just mild body aches and fatigue for a few days afterwards. Taking Tylenol and Benedryl 30 minutes ahead of time is supposed to prevent fevers and minor reactions that can occasionally occur. I don't personally know anyone taking Benlysta, so if you do go ahead, please post how it is working for you.

  4. #4
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    the member of whl who is on benlysta is slim.

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