Hi all,
I just had my first infusion of benlysta last night and I really don’t know much about the drug, side effects, or the pros and cons. I am hoping that someone out there may have some experience with the drug and can shed some light on what I may expect. Any and all info would be greatly appreciated. Thank you 
Hi, yes I did around 5 infusions with Benlysta just recently but my insurance refused to continue to pay for it so I had to stop treatments. I think each treatment cost around $1800.00 per infusion. I went thru some itching and some horrible nightmares where I thought someone was after me with an axe. I also went thru some stomach cramps.But everyone reacts different so good luck and I hope it works for you.
Oh that is horrible Rachel! How could insurance companies be so cruel?
Aside from the nightmares and stomach cramps, do you think Benlysta was working?
I really hope this drug works and that my insurance doesn’t stop after I find out…I have tried everything else and so this is pretty much my last hope.
I had some very high fevers over the weekend (ranging from 102-104) and have been very congested and nauseous, but I’ve had all this before my infusion.
The only new side effect I can say is new are these painful headaches.
I’m remaining hopeful bc I have no other choice.
Rachel said:
Hi, yes I did around 5 infusions with Benlysta just recently but my insurance refused to continue to pay for it so I had to stop treatments. I think each treatment cost around $1800.00 per infusion. I went thru some itching and some horrible nightmares where I thought someone was after me with an axe. I also went thru some stomach cramps.But everyone reacts different so good luck and I hope it works for you.
are you still on benlysta? I am suppose to start this but am not sure. Was told it is the lesser of the evils.
Okay that was December I was told I was going on Benlysta. I am still waiting. lol Too funny. The hospital had to set this up as they had never done this treatment before and then they had to train their staff. Then my insurance had to approve and now I am waiting to get an appointment. What a run around. It better be worth it.
I have been on Benlysta since October. So, this last infusion has made it 4 months. I was told the drug takes 4 - 6 months to start working. One of my doctors suggested I also have an infusion of 250 mg of Steroids since I’ve been taking oral steroids since June, which most of you know, above 10 mg daily, can cause some rough side effects. I had also suggested (since my face didn’t improve much) that I try taking plaquenil again- just while waiting for Benlysta to start doing its thing.
Well… I’m a little worried right now. My infusions were last Friday. The Plaquenil, I started about a week n half before the infusions, so they were in my system since they take 2 weeks.
After my infusions, I didn’t take my prednisone, assuming I shouldn’t since I just had 250 mgs.
About 3 days later, I woke up with eyes so swollen, they were near closed. My arms and legs were and still are so weak! My coordination is sooo off! I couldn’t hold my arms up, even to do my hair, without them getting extremely tired!
So, against my judgement, I went to the ER, thinking maybe allergic reaction?
The ER doctor told me because I went from an extreme amount of steroids to none, I blew up and that I just need to get back on an aggressive amount of steroids to bring the swelling down.
When I called my doctor, she was kinda like "I don’t know about that… We need to discuss next month’s infusion and what we should do about this steroid infusion."
Well, I went back to 20 mg of prednisone and swelling went down a bit - not completely, but enough where my eyes were round again.
So then I thought I was fixed and went down to 10 mg after a couple days. Yesterday, I missed my prednisone and woke up this morning with the worst swollen eye lids ever!
I took 20 mgs of prednisone, slept alll day n eyelids are “ok,” but the arms n legs r intolerable!
My body is sooo swollen- I can’t even zip my jacket as well and my arms and legs are so tired and hands are still swollen!
Now, my experience with steroids is that they work immediately to make it “appear” that whatever is going on, has been cured, but as we know, steroids don’t cure anything.
So, I’m scared.
I don’t know what is causing this!
Could it be the Benlysta and Plaquenil are interacting?
Could it be the Benlysta and Prednisone are?
Or is it my body reacting bad- really bad- to the Benlysta all together and hasn’t before since it was per 4 months?
The fact that this drug is sooo new, makes it incredibly hard to find the answer online!
The fact that this drug works differently per patient makes it just as hard to find someone in the same situation.
Also, the fact that there are so many different drugs working here - prednisone, plaquenil, benlysta - along with my own difficulties with lupus drugs (and I’ve tried pretty much all I know of) make it soo hard to pin point the reasoning for this!
I can barely walk right. I can barely lift things. I am having trouble seeing and coordinating and I have no idea y!
This is horrible! My face looks totally different! My lips r so big! I have a new chin and my eyelids are (although not as bad as this morning) still swollen.
ANY insight would be so helpful! I hope someone reads all of this and may be able to shed some light because even though I have doctors, I don’t know if they will even know because I don’t think this is common.