So, 6 months ago I was offered 2 infusions Abatacept or Rituximab, I went for Abatacept as the first thing they told me was the worst side effect that can happen with Rituximab. Fast forward 6 months later and I now have RA Interstitial Lung Disease and the treatment for this is Rituximab, my lung specialist has said abatacept doesn't work on the lungs and Rituximab is their go to for ILD. The abatacept hasn't done anything for joints either and it's actually caused pleural and pericardial effusion. I'm wondering if anyone is on Rituximab or been on it. I'm petrified to take it but at the same time, at the moment, I have a crap quality of life and missing out on my children's lives from being bedridden in pain. Any advice would be hugely appreciated. Thank you
Rituximab...: So, 6 months ago I was offered... - NRAS
Rituximab...
Sorry to hear this. I was switched from Rtx to Abatacept last September as after 8 years on Rtx my Ig’s became far too low and caused a lot of very troublesome bronchitis. My rheumy, a senior biologics specialist, said that she wanted me on Abatacept as It was known to be “gentle on the lungs”. I’ve read some scholarly articles saying Abatacept has cured some pleural effusions, so it’s often what one rheumy says against another. She did confer with her other two senior rheumy colleagues too when discussing my med change.. She was very keen not to put me on a med which would make my bronchitis worse. Also less infections she said and her Abatacept patients have mostly found this. Sorry it didn’t help you.
I’ve been on Abatacept since last September but have had to stop-start for Covid boosters and recently a dental extraction, so it’s not really had a full run at it’s ideal potential yet but I feel it’s doing really alright. I also feel although my last Rtx was April 2021 it’s still working a little for me as I always went a very long time for B cell recovery. Rtx worked superbly on my mobility and instantly got my CRP under 5. I never had an infusion reaction. I think the worrying side effect you mean is the very, very rare one but they have to declare it.
Do you know for sure Abatacept has caused your lung problems as RA can cause problems with the pleura when RA is uncontrolled whatever med you’re on. I hope you can make your decision and feel better than you do. Good luck.
Thanks for your reply. My Lung specialist is from The Brompton Hospital and a whole team have looked at my scans and the effusion changes are in time with the abatacept. I also told my Rheum consultant that I thought i was reacting to it. I first started on the injections and by the end of the day my chest would hurt, like costocondritis, switched to IV and the same happens with that plus I'm sick and in pain for days after. Overall its not working on my joints whatsoever. My CRP is 106 at this very moment, would love it to be even half that. I get they had to declare that side effect however I don't think they should've started advertising RTX to me with that.Thanks again x
No, it seems Abatacept isn’t working at all for you. 😑 My CRP has been under 5 for 9 years and a biologic med should keep it that way. Definitely there is evidence that Abatacept is better for those who have chronic bronchitis but my issues aren’t structural as such re the lungs. It’s about severe sputum build up due to hypogamma. No, they should have not focused on the main rare side effect of Rtx when discussing it. Made you aware but said it’s very rare. Rtx got me moving after coming to a complete standstill when 2 anti-TNF’s failed. Were the Abatacept infusions stronger on your body I wonder? I’m on the sub cut injections. You definitely know and feel something is amiss and can usually pinpoint it as you did. Good luck and let us know how you get on. x
I’ve been on this for getting on for ten years. Works well for me. I wonder whether the dreadful side. Effect you were told about. Tge infusion is slow they monitor you carefully
I’ve been on Rituximab for about 10 years. It works very well, no side effects to report. The very serious one is very rare but I understand it is scary.
It’s a shame you didn’t investigate the side effects of Rtx you were told further, as the most serious side effect happens very rarely…….I have been on Rtx for RA for7 years & have had no problems….but in your position I would listen to my doctors, they understand your condition & will be prescribing what they consider the most suitable meds for you. I do hope whatever you do decide to take is very successful.
I’ve been on Rituximab for about 9 years. It’s given me the best control I’ve ever had. The most serious side effects are incredibly rare. During the infusions you are extremely well looked after. They take obs every 30 minutes.
Sorry to hear you have ID. I can empathise as I was diagnosed with pulmonary fibrosis, which I believe comes under ID, 8 years ago. My chest consultant is convinced that RA was the cause and I have no reason to doubt him as I'd previously developed a nasty persistant cough during a prolonged severe RA flare. I too have been told that I have an aggresive form of RA and going by the state of my joints, I have no reason to disagree with that, though looking at your profile I have not had the amount of trouble that you have. Thankfully, there has been little deterioration with my lungs since diagnosed.
Yea my Lung doc said about pulmonary fibrosis, my Father in law has it. Not very nice, sorry to hear you have it! Mine isn't PF and told me it isn't life threatening but obviously needs to be controlled. "Severely destructive" yea, no s***! It's bad enough to get it but the aggressive form too just takes the ....! It is honestly the gift that keeps on giving. Hope you stay as well as you can x
I started RTX last November- just having the next dose . It took a long time to work, but I’ve had no side effects. I did test positive for COVID in January but wasn’t ill with it.
I m just hoping it works more quickly this time!
We have to balance possible side effects against the certainty of pain and limited mobility and limited ability to enjoy life
Good luck with your decisions
Abatercept hasn’t worked long for me either. I’m disappointed but hoping to go back to Etanercept becuase the UTI’s it was thought to have caused was a mistake. The UTI is there but termed silent and the blood and there is a good bit of it is down to my CK D and it looks like when they did the biopsy a minor blood vessel was damaged. It rare but means a Doppler Scan because you can’t have contrast ct with CKD and MRI’s don’t show kidneys well. So as nothing really can be done I’m really not sure I want that done either. I feel fine but it’s caused a blip while permission is got to go back on a medication. The Consultant said that she’d explain not my fault or was my decision to stop Etanercept which worked well and it’s just time. Honestly in my case the it’s one step forward and two back! I have big birthday tomorrow and 5 years ago thought I’d not make 66 never mind 70 so despite everything life is really good. We are so lucky to be looked after and the NHS has been wonderful, I am blessed and going to put sunglasses on today to into a spare bedroom as the decorators have been in this week and the subtle pink my granddaughter chose for her room on the walls is lurid! Her Wow and gasp yesterday was wonderful now to order a unicorn patterned window blind. Such is life the joy that children bring makes it worth looking to the future as in my head I’m still 40!!!!!
Have you been on NSAIDS for a long time? My kidneys are permanently damaged, currently CKD3, from taking NSAIDS for 20 years, had to stop them 18 months ago! Might be worth asking about if you are on them still.I was on Enbrel/Etanercept for years too, about 14 then it decided to not work anymore. Enjoy your spare room, I'm not even 40 nor near 40 and feel like I got hit by a bus daily!!!
I’ve never taken NSAIDS ever, stage 3 you’re lucky I’m low 4 but it doesn’t hurt so that’s one good thing. I had a AKI from a common medication just bad luck and entirely unpredictable it’s a wait now as a Barrister is in charge. I crashed to GFR 8 it’s gone up a bit so a transplant isn’t yet needed or dyalasis but who knows I live every day and thankfully I lead as normal a life as I can.
Lucky, I would hardly say I'm lucky. I flitter between stage 3 and 4. I'd be lucky if it stays that way. One less thing to worry about.
I was being ironic, not rude. Sorry if you thought that.
I've been on rituximab for about 5 years and it's the best medication I've been in for my RA x
Thank you for replying. Getting a lot of relief reading all these positive comments x
Sometimes the information that's out there can be so scary, but honestly you will have great relief if it works for you. Some find it works straight I found it took about 18 months for the full benefits of it but give it a good shot xx
I have been on Rituximab for 17 years - I took part in a trial before it was generally approved. For me it has been a life saver. My first 3 sessions, 6 months apart needed or not, on the trial, led to a 7 year remission. Following that each session comprising 2 infusions of 1gram a fortnight apart have lasted between 18 and 24 moinths befor needing retreatment. My last one being a single infusion has lasted only 9 months and the thinking is, apparenmtly, a more frequent smaller dose is better for me. Now, side effects. The only side effect I get as flushing to my upper body the might after the infusion and part of the next day. Other than that, I have no side effects at all. Apart from my feet and fatigue, Rituximab leaves the rest of my body as is I did not have RA. However, I have read that others have had more significant side efects
I have just had the first 2 RTX infusions and at just 3 weeks since the first one I'm starting to feel less stiff. Instead of going up the stairs properly, I was going up 1 at a time if that makes sense to anyone else, just yesterday I managed to get back to normal. I have had some side effects which I have documented on here but so far so good.
Hi,just to say I have been on RTX for 12yrs, all I can say is it changed my life completely,,from not being able to walk or move without great pain,,,to now and doing almost anything.. But all people are different and have different reactions. Hope you get relief whatever way you choose to go.
I've been on rituximab for several years with no ill effects. Good luck
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