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Benlysta - what do you know?

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  • Benlysta - what do you know?

    I understand there is a new drug available for auto-immune diseases called Benlysta and it's only available in the US. Does anyone know more information on this and if it will be available in the UK?

  • #2
    Benlysta has been approved by the FDA in the US. Since I am from the US I can't provide information on the availability in the UK. A few of our members are presently taking it and will hopefully share their experiences. Further information can be found at the following link: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0010374/

    Take care,
    Lazylegs

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    • #3
      hello nat1969,

      i am in the US and i have been on benlysta for 4 months now. unfortunately, i have not seen any positive effects of the drug at this point, but my doctor says most patients take an average of 6 months to see a difference and some take up to 8 or 9 months! so...i'm trying to be patient in the mean time. benlysta involves getting infusions once every 28 days after 3 "loading doses" that are 2 weeks apart at the beginning. the infusions are pretty simple and tend to run quickly, so i've not found them to be horribly inconvenient or anything. i do tend to flare after the infusions, so my doctor treats me with solumedrol at each infusion -- i have been told by other patients that flare reactions tend to go away over time, so i imagine so will the solumedrol.

      please ask if you have any specific questions -- i am happy to help.

      kit

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      • #4
        Hello Nat... I know that you have to apply for funding if you want/need this treatment in the UK... I am just about to commence a trial on a new drug as my rheumy thinks Benystla won't be strong enough for me.

        It depends whether your Rheumy thinks benystla the correct med for you and then you have to apply for funding etc etc..... wish you well....Claire

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        • #5
          Hi Kit,
          Can you please tell me how long the infusions take? I am thinking of taking Benlysta, but work so taking time off is difficult. My doc and I discussed getting it possibly in the summer as I am in the middle of my Rituxin treatment right now. I am hoping that I can someday get off of prednisone. What happens when you flare after the infusion?
          Jeannie

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          • #6
            jeannie --

            would you be continuing with rituxan? i don't think rituxan and benlysta are meant to be used together since they are both considered biologics.

            the infusions are quick as long as you don't have any problems during them -- if you experience headaches or any allergic symptoms, they'll slow down the rate to limit the symptoms. in theory, it takes 30 minutes to mix the benlysta and 1 hour to infuse. i've talked to patients that take anywhere from 1-3 hours to infuse, depending on symptoms...but i have always been infused in that 1 hour (+30 min wait beforehand for mixing) with no problems.

            when i experienced a flare after my first infusion, i had very debilitating weakness and "bone" pain in my legs and arms. i thought it was an infusion thing, but my doctor said it was a flare response. he decided to give me solumedrol with all the next infusions and i didn't experience the same symptoms. strangely enough, i had another infusion this week and due to a high heart rate, they held off on the solumedrol because they didn't want my heart rate to go higher. the next day, i had extreme weakness in my arms/legs, so they made me come back and get the solumedrol despite the high heart rate. the weakness is still there, but no worse so i think it will be on its way out tomorrow.

            not everyone experiences a flare in response to the medication and there are quite a few that have no bad effects whatsoever! many patients are able to reduce their prednisone (or get off it completely) because of benlysta, so it might be worth a shot.

            kit

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            • #7
              I would be stopping the rituxin if I take Benlysta. Thank you for the info. I hope Benlysta helps you and the flares stop. My rituxin infusion takes hours, so good to know that Benlysta takes less time. My doc and the infusion center don't know much about Benlysta. My doc said he would do more research on it. All I want is to be able to function more like my old self and get off the prednisone, sigh.

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              • #8
                one thing to keep in mind is that while benlysta infusions are shorter, they do happen more often than rituxan. but i find that the shortness of the infusions really makes it possible to keep other commitments (like work) if necessary. in the beginning, there are 3 loading doses of benlysta, done at 0 weeks, 2 weeks, and 4 weeks. after the loading doses, all infusions are done 28 days apart.

                benlysta is a good choice if you do not need something that works quickly. it is NOT a quick drug, so for people in more dire situations (like active lupus nephritis), it is not very appropriate. but it is indicated in situations where patients are looking to lower their steroids, improve quality of life, improve symptoms, etc. personally, the results i'm hoping to get from it are help with the fatigue and maybe help with the joint pains too. while i have some other more serious lupus issues, they are addressed by other meds and these two lingering problems seem to bother me the most on a daily basis. my rheumy has seen good results with benlysta addressing these issues in some patients.

                good luck!
                kit

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                • #9
                  Thanks for the info! I think I am a good candidate and would love to not take steriods anymore. Unfortunately, I doubt I will ever get off them, but I'll take less fatigue.

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