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    Benlysta infusion for SLE Lupus
    avatar
    dkarim1019 posted:
    Good Afternoon,

    I'm writing this to find out if anyone has tried benlysta infusion. I'm on my second infusion and my first one didn't go so well. I'm not telling you this not to do the treatment I'm telling you this so you are aware. My first infusion was on February 5, 2016. My doctor wanted me to try benlysta because nothing else seems to be working to suppress my lupus symptoms. I was really scared when I went in for my first infusion because I didn't know how was going to react to this new drug but the staff was very comforting and knowledgeable on how to administer the drug so that made me feel so much better. During the first infusion I had a slight complications my vision went very blurry couldn't see out of my eyes and my blood pressure will raise tremendously so they stopped the in fusion and then the restarted it after 10to 15 minutes. Going home that day I was extremely tired as if I was drugged took actually almost 5 to 6 days for me to get out of bed I was very very weak had very bad headaches and extremely confused ( brain fog ), nausea and dizziness . I was really worried because I didn't have symptoms like this in over a few year manifest. I wondered if this is what I had to look forward to in this treatment. I wanted to get this drug a chance so that I would be able to get better and have a normal life. So I continued on to my second infusion which is on February 19. I have less tiredness when I wake up but by mid day I'm totally wiped out and weakness I was out of bed probably by the third day but then I developed new symptoms I didn't have before I have leg and arm pain I can't stand on my leg or move my leg when I'm sleeping my shoulders and neck pain also achiness all over my body. So I do understand that it will take some time to see the benefit effects of this drug but it is a tough road so I want to know if anyone else out there has had similar or better experience than what I'm having so far as a single parent it's been really hard to keep up the front to my family that I feel great when my body is screaming pain all over. I was diagnosed in March 2008 but I have been just surviving and NOT living. thanks guys for any encouragement or feedback you can give me.
     
    avatar
    lupylisa44 responded:
    If you are looking for some great information on Benlysta, there is a facebook group called Benlysta Buddies. It is a tremendous resource for anyone getting Benlysta!


    Lupylisa
    With love, with patience and with faith, we'll make our way.
     
    avatar
    undefined responded:
    I took Benlysta for a year an a half. The symptoms you describe are exactly what I went through every month for a year an a half. I eventually could not take it anymore & stopped, but......IT CHANGED MY LIFE. I won't lie and tell you that I do not feel good on a daily basis, but there is an energy that is underneath that discomfort that allows me to live my normal, take care of my family, my business, etc. and certainly better than I was for the 10 to 12 years prior to the treatment. I believe that it will be 3 years in December, that I stopped with the Benlysta treatments. I still struggle with the occasional flare up. I do need more rest than others in order to take care of my responsibilities, but ultimately, if I plan things according to my situation, I owe this new normal to Benlysta. Tough ride, but well worth it!
     
    avatar
    dkarim1019 replied to 201152306's response:
    Thank you. I am on my 5 treatment and I am feeling so much more energy and less pressure and swelling in my lungs and heart area. It was rough the first few doses but I figured out if they slow down the infusion to 2 hours instead of 1 hour my side effects don't really manifest so fiercely or at all most of the time. So thanks for the encouragement.


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