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    Benlysta
    avatar
    JaneEdwards posted:
    I have lived with lupus for over a decade, have tried all of the medicines available to manage the disease, and suffered side effects that out way the benefit of the medications. So now Benlysta is available, a new hope for relief. Can anyone give me advise on the pros and cons? The drug is so new, so long term effects are not really known. The literature says it may cause cancer! How safe is this drug? Is the risk worth it?
    Reply
     
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    ida507 responded:
    I have only had one treatment myself,I go for my second treatment Wed. the 11th of July. I had no ill effects the first time other rhen a little nausea but that went away pretty quick. I like you am hoping for the best with this becuse I'm having allot of pain with this flare. I'm told it can take 4-5 infusions before i could see any effect from it. That is no promise either. Like you said " it is so new" I'm croosing my fingers and hoping for the best. I hope for the best ffor you too. This is hell for anybody going through this for them and their families too. Good Luck to you!!
    ida507
     
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    JaneEdwards replied to ida507's response:
    Thank you so much for your kind words! I guess we will be the guinea pigs on this one and I hope that it paves a brighter road for those that follow in our footsteps. All the very best to you!!
     
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    suzy68 responded:
    hi I have been living with lupus for 15 years now and I am in the same boat as you ...My doctor told me yesterday that she wanted to start me on benlysta too. I read all the information she gave me twice..it REALLY scared me to death...I am not sure if I should take . thanks for posting your question..it will help me too if more people reply to it.....I hope you feel better...
     
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    yogogal responded:
    I have had five infusions and can tell some difference in a couple of my painful areas. My docs told me not to expect any improvement for six months so when I noticed a lessening in my hip pain after the first infusion, it made me believe there may be hope for further improvement. It hasn't touched my horrible fatigue yet though. I have no idea how to gauge the safety, I trust that my doctor wouldn't put me on it if he felt it would be detrimental and, I am not sure how long it will take for us to know if there are harmful side effects.
     
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    JaneEdwards replied to suzy68's response:
    So great to hear from you! So after much thought I decided to stop taking the benlysta. It was a hard decision as I did feel some benefit from the treatment. I think for me it was the risk that it may cause cancer that scared me the most. So many medicines have come onto the market and then caused negative results and ultimately lawsuits. I just couldn't do that to my kids. So now the question is what to do next?? A career change for sure, and continue to search for other ideas!
     
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    JaneEdwards replied to yogogal's response:
    Thanks so much for your reply! I am so glad that you have found some relief, it is so wonderful to have moments of feeling good.
    Do you have any other remedies that have worked for you?


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