Rituximab and ibd : Hi I have had RA for 17 years and... - NRAS

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Rituximab and ibd

debsy29 profile image
debsy29
β€’20 Replies

Hi I have had RA for 17 years and mostly controlled with drugs, has anybody had any problems after rituximab with bowel problems?? I have had 4 rounds of the drug but now developed inflammatory bowel disease and wondered if there could be a link???

Thanks 😊😊

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debsy29 profile image
debsy29
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Cathy777 profile image
Cathy777

I have only had two rounds of rituximab and not had such problems so far. I did expect a better result from this drug as I still get a fair bit of inflammation in my hands. I think any drug can cause changes in your bodily functions and I guess its pot luck who gets side effects with various drugs. So this could have caused this but I am not sure if they can specifically say it is caused by the drug. We are at the mercy of all these drugs and I am not surprised that symptoms such as yours can occur. X

debsy29 profile image
debsy29β€’ in reply toCathy777

I agree it's weighing up what the best option is x

AgedCrone profile image
AgedCroneβ€’ in reply toCathy777

I too have had two rounds ...4 infusions ..of RTX, & also find my hands are still showing inflammation & are quite painful. But the rest of my joints that are usually affected...elbows & shoulders are less troublesome.

My Rheumy seems happy with this & says if my hands & wrists are still causing me pain next month he will give me a Depo injection.

I too thought ...maybe naively - the Rtx would either work or not. I didn't realise it could 'sort of' work!

Cathy777 profile image
Cathy777β€’ in reply toAgedCrone

Yes exactly! But I will continue with the infusions as any pain relief is better than none. What is a depo injection? I am having some steroid injections into fingers which are just so stiff and clicking. My wrists hurt too. Hands are pretty useful appendages! X

AgedCrone profile image
AgedCroneβ€’ in reply toCathy777

Depo is short for Depomedrone. I have it in my thigh & it calms all my aches & pains. It usually works straight away & can last up to 10/12 weeks.

I find injections straight into a joint are excruciating & mostly don't work.

I just re-read my post...I can't count(!) I have had 6 infusions....the last 2 in April & I may be imagining it but I was slowly getting pains a week or two before & these last two don't seem to had much effect. It really is swings & roundabouts isn't it?

Cathy777 profile image
Cathy777β€’ in reply toAgedCrone

I will ask my rheumy about that depo. Not heard of it. Yes I fear the effects could wear off but there are other bios that we can try if ritux stops working. A constant battle and never know what's going to work and for how long. I guess we are lucky with the drugs on offer as they are mostly relatively new. I often think of people in the past and how they must have suffered. Not even steroids then.

debsy29 profile image
debsy29β€’ in reply toCathy777

I've had lots of depo injections and they def help πŸ™‚

Cathy777 profile image
Cathy777β€’ in reply todebsy29

Thanks. I shall definitely look into that. X

Cathy777 profile image
Cathy777β€’ in reply todebsy29

Oh so depo has prednisolone which is a steroid. I take that in tablet form. May be a difference I think.

AgedCrone profile image
AgedCroneβ€’ in reply toCathy777

No it's NOT Prednisolone there are different types of steroid & I can't remember which is which, but it's definitely not Prednisolone as I can't take that

Cathy777 profile image
Cathy777β€’ in reply toAgedCrone

OK. I will ask at next appointment.

AgedCrone profile image
AgedCroneβ€’ in reply toCathy777

I agree I think 50 years ago I would have been crippled by now.

But after 18 years of R A I want to stamp my little foot & say "OK you've had your way with all these Dmards, analgesics & now Biologics...when am I going to get the good stuff that works"?

But then patience never was my strong point!

Cathy777 profile image
Cathy777β€’ in reply toAgedCrone

Is there any 'good stuff'?

AgedCrone profile image
AgedCroneβ€’ in reply toCathy777

Probably not! But I'm into instant gratification...& all this waiting for X weeks then finding the drug hasn't worked then being told..."Don't worry there are plenty more you can try" was wearing a bit thin after 18 years.

I'm still waiting for the "second shoe to drop" with Rtx!

Cathy777 profile image
Cathy777β€’ in reply toAgedCrone

I agree totally. Our lives are slipping by and waiting for this or that to work is not impressing me at all.

AgedCrone profile image
AgedCrone

I honestly don't know but I was diagnosed with IBD years ago. It has long since settled...but my rheumy knew this & he still prescribed RTX.

I have had 4 RTX infusions & no bowel problems at all.

Have you spoken to your rheumy nurses?

They are usually aware of any reports of IBD when on .Rtx.

Hope it settles down soon Debsy!

debsy29 profile image
debsy29β€’ in reply toAgedCrone

I am due to see them shortly so will mention it thanks

debsy29 profile image
debsy29

Thanks for replies peeps 😊😊

KayEP profile image
KayEP

I've had 3 round of rituximab and RA systems feel better, although I have had bowel problems for some years now. I've been through lots of DMARDS and biologics so not sure what has caused my problem. Started doing a liver detox every 6 months which has helped a lot with the excruciating pain I had every month. Also reduced certain food items which I thought might be the triggers (I had given up coffee many years ago, but started again recently), stopped eating bread, potatoes and reduced meat intake. I've had 2 fibroscopies which showed nothing and am due for a colonoscopy next week. Will let you know if anything is found with this. Take care. xo

debsy29 profile image
debsy29β€’ in reply toKayEP

Thank you and good luck next week xx

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