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.
this sounds really awful---I am so sorry you are going through all this but it sounds like something you absolutely have to take care of. Are your docs at least paying attention to you when you and looking at all the possibilities?
I tend to stump my doctors because most of the drugs they have successful results with other patients, either don’t do anything for me or my body rejects.
I’ve tried methotrexate, cellcept, dapsone etc. The Benlysta was pretty much last 1 to try, so I am hoping whatever is going on, isn’t from the Benlysta.
janice said:
this sounds really awful—I am so sorry you are going through all this but it sounds like something you absolutely have to take care of. Are your docs at least paying attention to you when you and looking at all the possibilities?
Just finished seeing my doctor … No more benlysta for me. Apparently, all of the symptoms are my body’s way of saying "nah-uh."
I hope this drug works well for others. Back to plaquenil I go!
Lol! I believe my doctor will do the same; just surprised she hasn’t already! Lol
I’ve been taking oral steroids since June and this is the first time I’ve had anything like this happen. 
Even though this is a reaction to the benlysta, I am going to ask about injections of steroids instead of oral.
Thanks 
Rachel Simpkins said:
dont feel bad Laura, my body changes Daily!!! My last Rheumy threw my paperwork! and said back to the University I go… LOL
Laura said:I tend to stump my doctors because most of the drugs they have successful results with other patients, either don’t do anything for me or my body rejects.
I’ve tried methotrexate, cellcept, dapsone etc. The Benlysta was pretty much last 1 to try, so I am hoping whatever is going on, isn’t from the Benlysta.
janice said:this sounds really awful—I am so sorry you are going through all this but it sounds like something you absolutely have to take care of. Are your docs at least paying attention to you when you and looking at all the possibilities?
Wow. You are having a hard time of it. I have had my second infusion of Benlysta last week. I am on plaquenil and only 5mg prednisone. So far I have not had any bad reactions to Benlysta. I was told that it is a slow working drug but can be effective for some. The only problem I had this second time was dizziness and nausea but that could also be from whatever. It is so hard to tell sometimes what is from Lupus and what isn't. It seems doctors don't know either. Just keep looking for answers and make your doctors see you. They do work for you. They should at least be researching and trying to figure out what is going on.
Amazing update for all!! After my last infusions doctors kept upping my prednisone to bring down the swelling.
I ended up in the hospital for a couple nights and there was no improvement.
That was this weekend that just passed. I was so scared and so upset that the Benlysta didn’t work!
But! I went to see an AMAZING doctor in NY - dr Andrew Franks at NYU and when I told him that I swelled up after my last infusion of Benlysta when they also gave me an infusion of 250 mg of steroids,
Said “that explains it all!!” they should have never given me all of those steroids with my Benlysta!
That in fact, this isn’t the reault of Benlysta, but of the steroids they infused with it!
He told me he wants me back on Benlysta ASAP! He promises me he will get me back to normal!
He said they are the ones that did the Benlysta studies and fully believes Benlysta is going to work wonderfully for me!
I am so excited! I was devastated when I thought the Benlysta was the culprit because before my last infusion, I felt I was doing so well!
I didn’t have any fevers, sores on my scalp, my hair was coming back and I didnt have any joint pain!
My next infusion has been scheduled for April 2nd!! They will be tapering me off the prednisone and the swelling will be sure to FINALLY go away!
This doctor said, with the studies and his experience, he’s seen it take up to 12 months for a patient to go into COMPLETE REMISSION!
I can’t express how much Hope I left with!
He also told me Lupus is Latin for Wolf and that he will kill the wolf!
I hope this helps others who are either already trying or thinking of trying Benlysta!
I will update after my next infusion!
Corrina said:
Wow. You are having a hard time of it. I have had my second infusion of Benlysta last week. I am on plaquenil and only 5mg prednisone. So far I have not had any bad reactions to Benlysta. I was told that it is a slow working drug but can be effective for some. The only problem I had this second time was dizziness and nausea but that could also be from whatever. It is so hard to tell sometimes what is from Lupus and what isn’t. It seems doctors don’t know either. Just keep looking for answers and make your doctors see you. They do work for you. They should at least be researching and trying to figure out what is going on.