Benlysta vs rituxin

I’ve had four Benlysta infusions in the past two months and now I will go once a month. This past time I had such bad side affects that I ended up in the ER fri night and was hallucinating sat night. I’m fatigued and just starting to build strength in my arms and legs now. When people say the Benlysta isn’t working, how and when do you and your dr come to that conclusion? When do you know when to stop? My dr told me a week ago before this past infusion that if this doesn’t work we will try rituxin. Haven’t looked that one up yet but when is it time to stop being the Guinnie pig and just stay on the normal lupus pills and just deal with what lupus has to bring when it flares. What’s worse. Feeling like crap on the heavy drugs or taking the flares

You know I often think about that too. Hate being a guinea pig. Try this, doesn’t work, OK let’s move on to this etc… The bad part is having to endure the side effects of these meds and it not work to just go on to the next drug. But I guess for those who do find the right mix of drugs that works for them is great. Just a trial and error thing for us.

I had the same problems. My rheumy said if after 4 times with the Benlysta, it should work. I had horrible nausea the entire time I was on Benlysta. He changed me to Retuxin and I’ve had no side effects from it. I also feel somewhat better but not yet flare clear, but I have had only one infusion and at first he was going to have me on the 6 month infusions but changed it to every 4 months. While the natural method sounds wonderful and I bet it works well , but I can’t afford it. I am on a fixed income with a family. Insurance doesn’t cover the natural stuff.

Poker Face, I'm so sorry to hear that you had such a bad reaction to the's scary to end up in the ER with violent reactions to meds, that have been prescribed by our Dr. But, that happens sometimes because of each person's chemistry is different. I have been in the ER for many meds that didn't work for ME. I was so scared when my Dr. wanted me to try the Benlysta. But it seems to be working for me...I did have some nausea, but it soon went away. I hope whatever your Dr. has you try next will work. I too have felt like a gineapig. BUT it's worth the try to feel better, and not have as many flares. Feel better.

Ty to all who replied. It helped me and gave me some stuff to think about

Poker Face, you asked "how do you know it's working"? A Dr. looks at your inflammation markers in your blood work to see if they are improving or not. Some have to quit due to unbearable side effects, but that's what doctors are determining your results from. I know a lot of people who went on these very toxic drugs, and only one got benefits from it, and even with her I wonder if she just went into remission rather than this medicine helping. It's a valid question to ask what you'd rather bear. The poisonous side effects of medicine, or the lupus itself. I react so badly to most meds that I have chosen the lupus rather than the meds, but like Lone Wolf, I seek out natural alternatives, and I have supplements for many symptoms which helps me a lot.

Best wishes!

You hit it on the head. I was in therapy today talking about the very same thing. What's the better of the two evils? Thank you for the explanation of the inflammation markers. Never thought of that and didn't talk to the Dr about that either. I just thought if I go into remission for a longer period of time then the bad side affects would possibly be worth it. This past infusion was so horrendous that I said I didn't want another one. Now that I'm feeling better, I'm saying now that I'll try another one since now it's one month away. Ugh...the day before the 4th of July. Hmmm wonder if I should change that appt so I can be a bit healthy to enjoy Independence Day. LOL We shall see how it goes. I see the rheumy in a week and I'll be asking a lot of questions for sure. Thanks again.