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A MyLupusTeam Member asked a question 💭
Naperville, IL

Starting infusions soon, I have heard good things about Benlysta. Can anyone tell me what to expect. How long it takes, side effects, how many treatments etc. Is Methotrexate, Plaquenil, and Prednisone pretty much a life long sentence with severe Lupus? Thanks in advance!

June 24, 2020
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A MyLupusTeam Member

I'm moving on a new drug called Obinutuzumab. Very few people have had it here so I'm going on a clinical trial. Let me know how you get on with Benlysta and I'll tell you how I get on with this one! Lupus is ugly but we are warriors. Hugs back 💕

June 26, 2020
A MyLupusTeam Member

I unfortunately was prescribed Plaquenil for a life-long medication. It causes nausea until your body gets used to it. Hang in there! Sending hugs your way!

June 26, 2020
A MyLupusTeam Member

Hi! I've just come off my Benlysta infusions after 24 months. I had them every 4 weeks. Set up takes around 1.5 hours, they test your urine and blood pressure and temperature etc. Then they set up the drug, put in a cannula and you're good to go! The infusion takes 1 hour and then you're observed afterwards. When you're new to the drug they like to watch over you after you've had it. I used to stay for 3 hours because I had anaphylaxis to Rituximab. Unfortunately I'm not on Benlysta anymore as my lupus is too aggressive and it just hasn't touched it. I couldn't tolerate Methotrexate either. Plaquenil (here in the UK we call it by the drug name Hydroxychloroquine) has worked wonders for me. I've had it since I was diagnosed and I am still taking it. I have 400mg a day, again due to aggressive lupus but me and the drug get along well. It's bitter tasting but good stuff. Hugs and good luck x

June 26, 2020
A MyLupusTeam Member

Hi all . Thank Jehovah God for another day and for giving us Jesus to have everlasting life! Yes, Plaquenil and prednisone for me are lifers. Tried the chemo methotrexate and it worked but gave me awful side effects after a while like coughing up blood and general malaise. The infusion I have not tried but I can promise that the roller coaster gets better. Learn what flares you if you can. I am a reader of good things and believe spiritual Harmony provides calmness that allows you to weather the storms. I too have an oncologist and it is important for folks to be on the same page especially if the cancer is active. Hugs from afar and. Prayers.

June 24, 2020
A MyLupusTeam Member

I don’t take infusions but I take a shot once a week it took me a month to start feeling the effects of it it’s benylasta it helps my flares and sores are not as bad or on my face. It makes me want to sleep frist few days the dr didn’t know why I was doing that. But now my cancer dr wants me to come off of them I quess he knows it’s going to go against my Polychemia Vera . But I haven’t decided yet. If it makes me to live longer with my cancer I will come off of it. I got to talk to my dr and see. But my lupus dr don’t think it will hurt me but she not a cancer dr. I think your do good on benylasta my insuance wouldn’t pay for my infusion why I’m on the auto shot gives me shots and they hurt bad. Good luck I hope you do good. And you should feel better soon as you do the infusions.

June 24, 2020

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