Hi everyone
Hoping to get some advice from this amazing group.
So, I've been on benysta for about a year and though its helped I still have a lot of fatigue and am struggling a lot. My doctor has suggested Rituximab and was wondering if anyone else has made the switch? Or if you are on rituximab - how do you find it?
Any advice would be really appreciated.
thanks
alia
Hi, I’m on it. I had the first two infusions in Jan 2022, my third in Aug 22 and about to have my 4th in the next couple of weeks.
I do have a bit of a reaction so it has to be stopped, more IV steroids given, then started again, so it has always taken the full 6-7 hours to get it all in ( it’s supposed to take less time with 2nd, 3rd, 4th etc doses)
I was on MMF for years but they had become ineffective,I’d previously had a very bad reaction to methotrexate, tried Azathioprine but it was destroying my liver. I am doing well on Rituximab, The long day and reaction to the infusion are worth the several months of feeling better.
Some people can’t sleep the night of the infusion because of the steroid and antihistamine you are given at the start, but I had no problem. I am very pink the following day but feel ok. Hope this helps x
Have a read on comparisons/differences between these two monoclonal antibody treatments for SLE:
Hi Literatureteacher,
My husband who has RA has Rituximab IV infusions and says they make him feel like a new person. He had 2 almost a year ago, a further 10 days ago & will have the remaining treatment next Wednesday.
Prior to that he self injected Adalimumab as well as having Sulfasalzine, Meloxicam, Paracetamol & Tramadol all of which he still takes.
He’s had various DMARDs over the years but thus far Rituximab has been the most effective for him; He’s had no side effects and was on a early shift at work the day after his infusion recently.
Biologics were discussed for my self at my last Consultation with my Lupus Nurse as she said Rituximab or others could be beneficial.
We’re all very different, what suits one doesn’t suit another!
Good luck anyway 🙂
hello!
I had my first Rituximab infusion 10/2021 and have introduced IVIG 08/2022 to treat Lupus/Scleroderma. I truly believe this has helping my fatigue, body aches, lung involvement, skin , overall progression of disease. It took time to see results. It’s a slow and steadying treatment. Yes, I too had reactions, however, as mentioned below- steroids or Benadryl will be administered and they will titrate slower. Truly, it’s an avenue to explore.
I switched from Rituximab to benlysta. I have it every 4 weeks. I struggle with fatigue too but if your blood count is low they might add steroids. I am struggling with fatigue and lot of body pain. So I am on painkillers (Gabapentin, amytriptylin, morphine and paracetamol). It is a real struggle but we keep going. I wish you well.Take care xx
Rituximab 
RITUXIMAB
RITUXIMAB treatment
Rituximab infusion 
