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Have you taken Bynlesta?

Discussion in 'Other meds' started by sagehen, Dec 15, 2015.

  1. sagehen

    sagehen Junior Member

    Hi, everyone,

    It has been a long time since I have needed to ask questions on this site. I need your help now, if you can,
    please? My Rhuemy wants me to start Benlysta infusions soon. I need to decide if I think the treatment is worth the risk, involved. If you have taken the infusions, did they help you at all? If so, how many did you have before you felt better? What side effects, if any did you have? Is there anything else you think, I might need to know, before I start my infusions?

    Thank you, so much! for you help. ox Sandy Lee
  2. keebler

    keebler Moderator

    Lupusdude likes this.
  3. elliemarie

    elliemarie New Member

    It so happened that my protein was abnormal and when my rheumy did further blood work which we kappa/lambda serum ratio with immunofixation that was abnormal? She sent me to a hematologist to see if it was cancer. I was so scars. We have a lot of cancer in our family. I don't know if I want to start benlysta again. Did anyone have this happen to them? Thanks for your response in advance.
    Lupusdude likes this.
  4. Lanie Jee

    Lanie Jee New Member

    I am taking Benlysta, Sandy Lee, and though I was pretty apprehensive after doing all the studying about it, it has been a good experience. The only side effect I've experienced is a wee bit of tummy upset off and on for a couple of days, but it's not enough to interrupt my life as long as I take some OTC loperimide. I've had 3 infusions in the last 5 weeks and now sm on a monthly regimen. I do believe it's helping. After only the 2nd infusion, I seemed to have less fatigue and the severe musculoskeletal pain is less...BIG plusses for me. Also notable is that just after starting Benlysta, I needed to stop the prednisone because of hypertension. Even with that, the Benlysta is controlling symptoms fairly well. I hope this is an encouragement to you.
    Lupusdude likes this.
  5. Fem

    Fem New Member

    Hi Sandy Lee, I started my treatment in November after being stuck in a flare we couldn't get out of with Prednisolone this time round. The first thing it did was make my hair stop shedding like absolute crazy and bring a period back (albeit tiny) that I hadn't had for nearly a year, so it's regulating something for sure. I'm happy with it, but progress isn't as instant as say Pred. I get no side effects so far, and will look how things continue for a few more months and hopefully lower the pred too. Good luck!
    Lupusdude and Lanie Jee like this.

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