I just had my 6th infusion an every symptom I have ever had has come back an is steadily getting worse. I had some thing last clear up over time with imuran but after my last infusion on the first I'm back to the point I'm in so much pain an swollen I can't walk or open a bottle. Has anyone else had benlysta make then worse
It may be possible that your lupus right now is just flaring really badly and the Benlysta is not doing enough to stop it. Like I said I am on infusion 13 I believe. My pleural effusions started Nov 2015 before I started Benlysta, November 2016 I started getting kidney involvement and January 2017 is when they discovered the pericardial effusion. So technically my lupus is getting worse because I have more symptoms but the doctors theory is it would be *more worse* without the Benlysta. Benlysta as you probably know works to suppress the receptor on B-cells that turns normal cells into autoantibodies where as Riuxin works by suppressing the entire b-cell. This is what my doctor explained to me why things aren't progressing the way I want them too. My flare is out pacing the medicine. I have no idea if this is happening to you but I thought I'd put my two cents in. I'm so sorry to hear you've had so many bad drug reactions. I hope they find something that works for you soon!! xoxo
I've been on benlysta for over 3 years, for awhile I was feeling great after my infusion, I do have a seizure disorder..it has definitely gotten worse it has also made me very emotional the week to week and a half before I am due for my next infusion. I have found 3 breast lumps and have a swollen lymph node under my arm . I am scheduled to have a specific mammogram nxt Friday. I was supposed to have my infusion today, my rheumatologist had me cancel until I got my results done. I have CNS lupus, and have always been a bit sensitive to it, I am allergic to the autoinjectors, so I went back to the infusions. I have done really well on it, haven't had a flare in over 2 yrs, but lately my side effects have changed. I think it's due to me having CNS lupus. Good luck to you. I am not trying to scare anyone, we are all different and all have different types of symptoms
I take benlysta weekly injections,
Along with plaquinil, cellcept, & I asked rhumetologist about going off of any and she said, no, life expectancy of those that take this regime is better than those that don’t. I have SLE lupus.
I don't know for sure what to say, but I do know that I was on Benlysta for six or seven months before I realized how much it was starting to help me. Good luck!
Are you on any other medications other than Benlysta? It has not made me worse blood work wise I am about the same and I have had it for about a year now. But symptom wise I have much worse joint pain etc and my doctors put this down to not being in enough medication not that the medication was making me worse. Anyway, at next dr. Appt we are looking at Rituxin instead for infusions. I am also on plaquenil, cellcept and prednisone. My doc says Benlysta and cellcept work well together for some people if maybe you could try that instead of imuran. I personally can't get on a high enough dose of cellcept bc it gives me stomach problems but from what I've seen on this site I'm the odd one out for that.. Most people's stomachs have no issue with cellcept
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