First Benlysta Infusion...Scared

General
1

I have my first Benlysta infusion next Friday 11-18-11 and I’m very scared. Anyone on these infusions? What can I expect? Any feed back is appreciated!
Much love,
Tara

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a few on this site have started....my prayers are with you...i have not heard any neg feedback from the tx...lol

the way I worded it made it sound like my prayers are with you because some on the site have tried it...i didn't mean it that way. (smile) i mean to say: I am here for your support and i wait to hear how you do

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Thanks Janice. I’m very nervous & would like a better understanding of what to expect. I’m very sensitive to meds so this is worrisome. My first time to infuse. I have been on oral Immuran, which made me ill, and cause great weightloss…I was on methotrexate oral, didn’t tolerate it either then on methotrexate injections which I likewise didn’t tolerate. I am in leukopenia currently & am on no meds for disease . My Aldolase is high, my WBC is ver,very low… But my anti DNA is normal currently. Hoping to tolerate this infusion. My SsRo/Ra antibodies are in skyrocket mode:( I’ve always been sensitive to everything so again, I’m nervous:(… Hate Lupus… Though I’m not convinced Lupus is my biggest culprit. My symptoms are all over the place & always have been… Just want to not be tired, be pain free a while lol…I can dream huh ? Xoxo

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Tara I hope that it works for you please let me know. I also have sjogrens (CNS) and CLE. I am getting ready to start immuran and very nervous about it. I am currently on prednisone 20mgs and plaquinil and Colcry for pericarditis. My DNA has never been abnormal. We both may be a rare breed lol.

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I will try to...oh wait i just figured out how to find out who had started it...did you check the discussion box for benstyla tx?

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http://forum.lifewithlupus.org/forum/topics/benlysta-1 here's that site

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Fairykissez,

My sister started immuran for RA and she said it's her miracle drug. So I hope that is encouraging. Let me know how it works for you.

Hugs & Best Wishes,

Jenny

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Thanks Jenny, I hope it is my miracle too. I can start it yet cause I have a cold. I cant wait to get off these steroids though lol. I will definately let you knw how it goes.