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    Benlysta anyone tried it?
    ColbyJuanCanobi posted:
    I am going to have my first Benlysta infusion within the week. Has anyone tried it and with nwhat results?
    pri09 responded:
    Hi. I saw your post and wondered how the treatment session went and if you've had any reactions to the med.

    My doc said we were going to try Benlysta if my insurance covers it. I'm a bit nervous about it.

    Hope your treatment works for you!

    Warm regards,
    ColbyJuanCanobi responded:
    I had my first Benlysta infusion. I was there 3 hours. They first infuse saline, benedryl and steroids. Then it takes one hour for the Benlysta drip. I am very sensitive to Benedryl so I feel asleep, for who knows how long. I was dizzy and more off balance after. I also felt extreme pulsing pain in my small toe. My feet are numb because of CNS involvement so this was so strange. The pain lasted 2 or 3 days and I needed to take Ibuprofen at one point to ease it. My left arm and hand were also more tingly than usual. The next day I was so exhausted that I slept most of it. For days I had trouble focusing my eyes and felt nauseated and chilled and sleepy. I really couldn't function well for about a week. Now I feel really good. I have another infusion this Wednesday and I am a little nervous about how I'll react this time but also encouraged that it is doing something. I'll keep you posted because they really don't know that much about this drugs affects.
    krazlady replied to ColbyJuanCanobi's response:
    hi my name is kathy i was diagnosed 1997 and have been on many med when i asked me doc about it he said that there has been no studies on it so he did not feel like i should be a guinea pig
    ColbyJuanCanobi replied to krazlady's response:
    Hi Kathy. My doctor spoke with a professor who conducted a study on Benlysta and he told my doctor that one of the results they found was that it lowered ANA. I have extremely high ANA so it was only because he got to speak to this professor did we decide it was worth the chance. They have studied this drug on over 2100 people. It would not have been approved by the FDA without studies having been run. I do feel as if they don't have enough information on this yet, but I really needed to try something else where nothing was working. I guess you have to weigh the risks vs the hopeful benefits. Hope this helped.
    David Zelman, MD replied to ColbyJuanCanobi's response:
    Benlysta was recently approved by fda on basis of somewhat underwhelming data that suggest a modest benefit added onto " standard " therapy as defined by investigators performing the study. Excluded from the study were patients with severe kidney and Central nervous system disease.. It's true role has yet to be determined but it is by no means a "game changer".It is also extremely expensive. As a practicing rheumatologist , I was not planning on early adoption of its use and prefer to wait until more is learned about its usefulness and toxicity.
    David Zelman MD
    ColbyJuanCanobi replied to David Zelman, MD's response:
    Thank you for your feedback. As I mentioned, my rheumatologist had decided the study results didn't warrant trying Benlysta. It was after talking to a professor, involved with the study, he changed his mind. The professor said that they failed to include ANA readings from the participants, but when they went back they saw a marked reduction in ANA after taking Benlysta. My ANA has been as high as 1280 so we decided where nothing else was working it was worth trying Benlysta. Time will tell. It does make me sick for 5 days following the infusion but I feel more energetic after.
    cardkri responded:
    I just tried my first Benlysta infusion last week. Although I did not feel well the rest of the day- and know the following two days were still not 100% I was able to go back into work.

    I did notice though that after this treatment I experienced some depression and strangley paranoia. Fortunatly, I am always on high alert to mood changes as I am a manager and want to ensure my illness or its treatments do not affect my ability to do my job.

    I am excited about this treatment as my Rheumatologist was at a loss as to how to continue with my treatments. I have been on 70mg of methotrexate now for over 5 years and things were not getting better. I also had terrible reactions to plaqunail no until this drug there really was nothing out there we had not tried that would help.

    Good luck and let me know how your next treatments go.
    cardkri replied to David Zelman, MD's response:
    I am glad you are not my Rheumatologist. For some patients who have been suffering all their lives with the effects of this disease this is a welcome sign and worth trying. When doctors decide that "they" should wait without speaking with their patient because they just don't know enough about it or that it is too expensive then it halts the study and possible production of new drugs that can help those of us who suffer daily.

    I am surprised that you are the "expert" assigned to this page.
    lisaisweavebee replied to cardkri's response:
    Strange - I had the opposite reaction when my rheumy suggested I try Benlysta....I was appalled that he would so carelessly suggest a drug that has little track record and no known long term effect. Heck, for all we know, three years from now it may cause everyone to grow three heads. Let's face it - how many times has the FDA pulled a drug it had previously approved because it caused deaths?

    That said, you are right in that everyone has to evaluate their own personal situation and do what is best for them.

    For myself, I welcome a physician who dispenses drugs with caution and much thought.

    ColbyJuanCanobi replied to lisaisweavebee's response:
    Going for my 3rd loading dose Wednesday. I'm glad it will only be every month for now on. Where my reaction to the second dose was so different from the first (diarrhea and headache) I really don't know what to expect. I did find also an increase of irritability this time but after 6 days I had energy and felt good, I am hopeful and hope can do wonders and having something new to try has helped me to think more positive. My life had become just about working around my illness.
    ColbyJuanCanobi replied to cardkri's response:
    I know what you mean about the paranoia, I have to check my thinking to make sure I don't let it get to me. Last treatment caused extreme diarrhea and headache and exhaustion, After 5 or 6 days I felt energetic but have had restless leg syndrome and still occasional headache. I'm loving the energy during the second week after them infusion. Wednesday is my 3rd loading dose.

    Keep in touch so I know how you are doing. We'll compare notes.
    Susipu replied to ColbyJuanCanobi's response:
    I am new to this site but not lupus. Have both SLE and Sub Cutaneuos Lupus (skin). Have had for 16 years and am on steriods, Plaquinel and imuran along with many others. Long story short right now I am having skin flare. All over my body. Have always had problems with this and was once in hosptial.. On high doses of steriods now and really not working. We are going to try Benystal once I get approved. I have very high ANA also. How was your treatment today? Seems everyone has some issues but wondering about energy level right after and ability to function. Would appreciate any information you can give. I am at point where need something. Thanks Susi
    ColbyJuanCanobi replied to Susipu's response:
    Hi Susi. Sorry you are having such a rough time. My 3rd treatment affected me even during it. I all 3 times start coughing and can't stop until I get some water. I have nerve damage to my vocal chords and a 30 year chronic cough. I often cough due to a reaction to chemicals so some how the infusion sets it off.

    I also became nauseated this time, during the infusion. I stopped and got something to eat on the way home and that helped. The 3rd reaction was that once the Benedryl wore off I became almost manic and though I have had an emotional, energy draining week dealing with the tragic death of a close pregnant friend's husband and another close friend being sent home from Rehab to die. I visited with them both before the infusion and helped with funeral plans and her 2.5 and 5 year old babies. Point being I was so hyper I was up until 2am and up at 7:30 pm this morning.

    Things are changing. After about 5 days of not functioning well after the treatment, I feel really good and haven't required any full days in bed nor even daily naps.I have lost 6lbs ( I have cut out flour and sugar and eat fairly low carb to get rid of the steroid weight I gained but I had been doing that for months) my weight loss has seemed to speed up.

    I take CellCept 3000mg/day to try to slow down my immune response. I do not take steroids unless absolutely necessary, I have Central Nervous System Lupus so it's very different but where it's all about your immune system I don't see why they haven't tried Cellcept on you. I would ask your Dr to try that before the Benlysta.
    Sorry this is so wordy-I'm probably still hyper but I hope it helped. Abby

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