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Thread: Hi everyone

  1. #1
    Join Date
    Jul 2013
    Thanked 0 Times in 0 Posts

    Default Hi everyone

    My name is Doug, 52 yr old male who was recently diagnosed w/Lupus. Doc has me on plaquenil and methotrexate. Wants to start me on Benlysta. I'd really like to meet someone who is taking benlysta infusions

  2. #2
    Join Date
    Jul 2011
    suburban chicago
    Thanked 125 Times in 99 Posts


    Hello Doug,
    I too am a 52 yr old male.
    I was diagnosed 2 1/2 yrs ago-currently I am on plaquenol, mycophenalate and prednisone as well in the past I have been on imuron and methotrexate.
    It is not unusual to try different meds until the right combination is stumbled upon.
    In my case I have an elevated anti-ds-dna level (currently 138 down from a high of 198 0-10 is normal) that stubbornly remains high regardless of type or dose of meds.
    My ruhemy feels that since I am basically healthy (and have good insurance LOL ) that I am a good candidate for benlysta-He has been recommending this for the past few months but last week for the first time my urine tested positive for protein which concerns him (possible side effect from meds) since I am on the max dose of mycophenalate.
    So I will be starting benlysta in September when my ruhemy returns from vacation.

    How long have you been on plaquenol? It can take up to 6 months to take full effect.
    Normally benlysta is considered after other meds have been tried-I believe most insurance companies will not cover it until other treatments have been tried-due to its high cost.

    Take Care and Welcome!


  3. #3
    Join Date
    Jan 2013
    Thanked 34 Times in 23 Posts


    Douginmo.... I've been on plaquenal before and it didn't work for me. Now I'm on the highest dose of cellcept and still having flares and my blood results have always shown high numbers...So they put me on benlysta two months or so ago.
    I haven't seen any changes in the blood results. Doc says it could take awhile. My extreme fatigue is a little better. My pain is a little better too,,, still having other lupus related problems but I'm keeping my fingers crossed. According to my dr this is our last option. However,,, I have not had any real bad side effects as of yet. Hit me up if you have any other ?s as I have done LOTS of research on this med

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