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Thread: Benlysta

  1. #1
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    Default Benlysta

    My rheumy is increasing my Arava, hoping to get me out of the Prednisone cycle. I cannot be off at least a low dose of Prednisone for more than a couple of weeks without flaring. This latest flare has been a doozy. I cannot do any major physical activity without having to nap, lots of chest/rib and leg pain, and the mental confusion is the pits. She stated at my appointment this week that it may be time for a change because my liver enzymes are getting slightly out of whack. She is talking about Benlysta. Since the appointment on Tues. I have developed another sore inside my nose and chest pain that requires a muscle relaxer to be able to breathe deeply. (My word! This all sounds so much worse now that I see it in print!) I go back in January and am seriously thinking of telling her I would like to just try the Benlysta. I hate the thought of infusion drugs, but from what I've read, it doesn't suppress the entire immune system, a huge plus for me since I work in a germ-infested public school and feel like I am constantly in autoimmune warfare. I read the other Benlysta post from October and was really encouraged. Any comments/experiences with Arava or Benlysta would be appreciated. Thanks.

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    Hi! I was actually logging on today to ask a similar question of the group. My doctor just mentioned Benlysta to me today at my appointment.

    I've had a lot of success with the methotrexate and actually requested to stop taking it due to the rate of infection I've been pulling in. I feel like I'm sick all the time, but I feel good otherwise so its a win lose. My doctor mentioned the benlysta because she mentioned that its rate of infections is only something like 5%. I wanted to try and compare it to the methotrexate infection rate but methotrexate is so old that they havent really done any of those kind of testing on it and if they did, it wasn't recently.

    Anyway, back to the point. I've heard a lot of negative things...all from the mouth of the rheumatologist whom wants me to take it. So I'm skeptical Ive heard its exspensive which all the new stuff is. I've also heard that it only showed marginal positive results in a certain select group of people. Apparently if you dont show a double strand dna you might not have any benefits. Its confusing and hopefully someone that's been on it for some time sees your post so we can both find out! I really dont like the infusion idea, but thats because I'm a huge baby and think shots burn.

    I wish you the best of luck!

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    I have not used it, but have done a bit of research on it and it does have a lot of contraindications and side effects. But, so does Methotrexate??? I think it comes down to how your particular body tolerates the drug.
    Hopefully someone with with actual experience with the drug will respond to both of you. I wish you the very best.

    Peace and Blessings
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    we have a few members on here who use this....
    there is also a facebook group, where it is discussed,
    loving life despite lupus
    https://www.facebook.com/groups/555581124518918/

    the page is set up by one of our members ritzbitz.
    it is mainly for teens, but others are also members

    the interesting i found out on this facebook page ......
    benlysta can take 6 months to start to work.
    it needs time to accumulate in your body to be effective
    When you're stressed, You eat Ice cream, Cake, Chocolate & Sweets. Why? Because stressed spelled backwards is DESSERTS.

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    Well, If I can be of any help to anyone Please ask away. All I can give you are answers and opinions based on my experiences. It has been a year come March that I've been getting Benlysta infusions. Lucky for me...My state insurance pays for it,but I see the bills from the hospital and it costs about $17,000 every four weeks. The rhuemy I see really had to jump thru some hoops to get it covered. My labs have improved greatly and I feel so much better. It is so nice to wake up in the mornings and actually have some energy. That is NOT to say that by early afternoon I'm totally pooped and I still have down days(pj's and couch). I feel as if I'm in the land of the living again..
    My biggest complaint is weight gain. Since starting I've gained 30lbs. I am 5'7 and my normal weight has always been in the 130's,sure I would fluctuate some. My rhuemy doesn't recommend quitting the infusions as I'm not even considered over weight YET. However, I am starting to get scared....I don't want to have to gain so much that I would be over weight. I'm thinking of asking him if we can maybe lower the dose or do it every 8weeks instead of 4. It's a bit of a catch 22,like a lot of the meds. But....this one is the only one to help as of yet

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    Thank you all for your replies. I hadn't been on here for some time, and didn't realize there were replies. My insurance has approved the infusions, something I hadn't really expected. The weight gain scares me. I have gained a lot of weight since my diagnosis. My infusion schedule is being set up at this time. I'll post how it goes. Again, thank you.

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    steve.b (02-06-2014)

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