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Taking new drug Benlysta

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  • Taking new drug Benlysta

    I have seen where some of you have questions about the new drug.. I have been in the trial for about 4 years and have been getting the "real" drug for about 1 1/2 years.. I can tell some improvment in my Lupus, no more mouth ulcers at all, but the biggest problem is the weight gain!!! I have gained about 40 lbs since i started recieving the new drug... it is discouraging, but i guess we take the good with bad.. I did not have the usually sickness through the winter tht i usually have.
    I really don't know what to tell you, I CAN TELL A DIFFERANCE in my diease.. plus right now i don't know what the doseage is that i am getting, it is through IV and missed with saline.
    Hope this helps some..
    Good luck to everyone on this new journey..

  • #2
    Hi Pam - that's great that you have had such a positive experience of Benlysta - long may it continue.

    Thanks for sharing that with us


    • #3
      Dear Pam,

      Thank you for sharing your experience with Benlysta. Sorry about the weight gain. That part is hard to accept sometimes.

      I am curious about whether your doctor has you taking any other typical medications for lupus while you are taking Benlysta.

      Let us know how things go. So glad you are feeling better!



      • #4
        Pam, thanks for sharing & please tell us more.

        Do you know of initial views on safety of Benlysta & pregnancy?
        Or it is probably still too new?


        • #5
          Glad to hear it is helping you, thanks for sharing with us.


          • #6
            Thanks for sharing as I am curious about this new drug. What causes the weight gain? Does it increase your appetite? Thanks!


            • #7
              Hi Pam,
              Can you please tell me how long the infusions take? I know they are once a month. I am on Rituxin and it takes a good 4-5 hours.


              • #8
                Pam I am so happy this is helping you get things under control.
                Please if you dont mind keep us posted as to how you make out moving ahead.
                Maybe you can find out your dosage too.
                I hope everyday brings you better health.


                • #9
                  I was so excited about the prospect of a new drug. I was told if you have organ involvement (mine is lungs) I would not benefit from Benlysta. I am very happy for those that can. I pray this is just the beginning of new drugs to come. Rosie


                  • #10
                    Pam that is so exciting that you are taking the new drug and seeing positive results (except for the weight gain), but I am sure you will figure that out too once your body just has to get used to the drug.
                    So how often will have to take it, is it like once a month for the rest of your life... sorry if that sound ignorant, but I just don't know... Like with Rituxan it was a 4 times, once a week for a month.... it worked for about 2 1/2 years the first time I got the infusion and the 2nd round that I received 3 years later they had to stop after the 3rd infusion because my body was having a negative reaction and it was affecting my heart.... so yes, many questions about the hot new Benlysta! You are now like a celebrity to me... *winking*