My younger sister has been diagnosed with a rare and very progressive form of SLE, that’s affected her organs and vision. She’s had some intensive treatment, that has concluded with her 2nd dose of Rituximab. Unfortunately she’s been experiencing symptoms such as watery diarrhoea, vomiting and some stomach pain. We don’t know if this is a sickness bug she picked up or side effects of the drugs. Her consultants are aware and have asked for stool sample. But in the meantime am anxious and wanted to know if this sounds familiar to anyone else..?? Many thanks, and wishing you all healing and recovery 🙏🏽
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Gooner786
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Im sorry to hear your sister is feeling so poorly . Rituximab does make you more susceptible to infection so the consultant should check that . When I first started on rituximab i had awful gastritis and felt very sick , i now receive it at a slow rate which has helped. I occasionally get some nausea after an infusion , ihave anti nausea pills to help if its bad .
Hopefully things will settle down and your sister gets full benefit from her treatment. Best wishes 🤗
Thank you for your thoughts. It’s been a whirlwind 6 months in and out of ICU and hospitals. Her treatment culminated with the Rituximab, thankfully she was fine when receiving the infusion. In between her two doses she picked up a sickness bug from the kids in the house which makes it harder to determine why she’s having the diarrhoea. Hoping it settles soon. Take care of yourself 🙏🏽
My husband has Rituximab IV infusions for his Rheumatoid Arthritis & has suffered no side effects at all, plus it has greatly helped with his RA symptoms. Everyone is different though & not all experiences are the same.
From my experience having been on Rtx for 7 years I have never experienced any gastric problems that can be put down to the infusions.It sounds as if your sister’s consultants are on the right track getting stool samples. I hope she feels better soon.
Thank you for your response and thoughts. Waiting for tomorrow so I can get the samples to St Thomas’ labs for testing so we can get some clarity hopefully 🙏🏽 Take care
Sorry to hear about your sister. I have been on Rituximab Infusions since Jan 2021. Six monthly. It has worked very well for my skin which was chronic and no other medication worked.
I keep a diary and my sister had noticed my stomach acted up for a few weeks after Infusion. I have had stomach and bowel problems over the past few years so was not relating it to my Lupus / Sjogrens but at this stage I think it’s all related. But everyone is different.
I had a gastroscopy in the past few months and discovered I have Gastritis again. I am now on a tablet and can eat again. Bloating, pains when eat and bowel much better. As I am in Ireland things work differently re Hospitals. My GP tried a few different stomach tablets before we got one that worked.
Don’t be afraid to speak up as you know when your sister is suffering. Sisters are great I bring one of my sister to my rheumatologist and Dr Apts as sometimes with brain fog etc I would forget how I had been between Apts .
Apologies for the long text remember everyones symptoms and reaction to medications is different. I do hope your Sister improves soon.
Thank you for your thoughts and wishes. We’re so new to this disease which has caused her rapid damage, it’s all very overwhelming with the range of symptoms, and potential side effects of all the meds she’s taking. She is being looked after by an amazing team at St Thomas’ and am really grateful - hopefully this is just the lingering sickness bug she picked up last week and will settle soon 🙏🏽
Sorry to hear about your sister feeling unwell. I've also been diagnosed with SLE, effecting my organs. I have been having Rituximab for the last 3 years after a bad flare of Lupus. I didn't notice a stomach ache/bug being a side effect and luckily I did not experience any negative side effects.
It sounds like you've already done the best thing you can; contacting the Rheumatology team for advice. Hope your sister feels better soon and her lupus symptoms get better once the Rituximab takes effect.
Thank you for sharing your experience. Due to my sister being such a rare case, it took a team of rheumatologists, ophthalmologists, and neurologists to finally reach a diagnosis last month from the start of her symptoms in June 2022. By which time she had 20% of her vision impaired 😔 So they’ve thrown everything at her, Rituximab being the last treatment. Given all the problems she’s had with eyes, lungs, and heart, the fact that she’s now got stomach issues is making me anxious. We have an appointment on Monday with the consultant so praying it’s not anything sinister 🙏🏽
Hi, I have Rituximab, the last infusion was in August, it works very well for me, I react quite badly as it’s being infused, it has to be stopped, more steroids and antihistamines, and restarted, so It always takes 7 or 8 hours to get it in, but other than that, no side effects, and for me it lasts about 8 months, well worth it. I reacted very badly to several meds, Azathioprine, methotrexate, and a couple of others I can’t even remember the names of, and gastric problems were definitely part of the reaction. They were destroying my liver.But everyone is different, hopefully your sisters symptoms will settle down quickly and she will find Rituximab helps in the long run, I’ll gladly take the day in hospital and the initial reactions over the day to day effects of living with lupus x
Hi and thank you for sharing. My sister had her first infusion three weeks ago, caught a sickness bug and was taken to a&e. Then had her second dose last Thursday, and has been poorly with upset stomach and nausea since. We’re seeing the consultant on Monday, and hoping it’s not anything sinister until then 🙏🏽 Take care of yourself.
oh your poor sis, it’s really awful whilst trying to get the meds right but once you’re on the right ones, you get your life back your sis has you on her side, and your support is a huge factor. So many of us have nobody that understands how debilitating this illness can be, because we look ‘healthy’ we can’t possibly be I’ll and are perceived as just ‘making it up’ Im lucky, my employer is fab and my manfriend is supportive, but some colleagues, not so much, I know they think I’m just taking the proverbial, and that is hard to take, but your sister has you supporting her, and that’s going to be invaluable going forward x
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but once you’re on the right ones, you get your life back 
your sis has you on her side, and your support is a huge factor. So many of us have nobody that understands how debilitating this illness can be, because we look ‘healthy’ we can’t possibly be I’ll and are perceived as just ‘making it up’ Im lucky, my employer is fab and my manfriend is supportive, but some colleagues, not so much, I know they think I’m just taking the proverbial, and that is hard to take, 
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