Hi, anyone on Rituximab found that they had a flare after the first infusion? I'm having my worst flare in 15 years (I'd forgotten I could be such a wimp!).
I'm due my second infusion tomorrow and am hoping that it will settle down.
Anyone else had experience of getting worse before settling down to a good outcome with rituximab?
I am on Truxima which is a Rituximab biosimilar. I didn’t have a flare after my first in fusion and felt quite good. I put that down to the steroid infusion I got immediately beforehand.
Sorry to hear your post-infusion experience was not good and hope after tomorrow you will be ok.
Hiya, I did flare quite badly in between the first 2 infusions. Ended up in A&E to get my knee drained as it was so massive. Still on steroids so waiting to see if the Rituximab has had an overall effect (it's been 3 months since), but I'm hoping it will tide me over and the next one will be successful.
I hope it works for you! You may be the same as me and need some steroids to give the Ritux a chance to work. I hope you can get your flare sorted xx
Well after a try dreadful day I'm looking forward to tomorrow and hopefully the steroid infusion will work and provide some relief.
Sorry you're having a flare. They can happen at any time, and it takes a few weeks for the Retuximab infusion to kick in. Hopefully after tomorrow's infusion when you get the extra steroids they will help. I find they help in between the infusion and it kicking in. Otherwise you may need some oral steroids to tide you over.
Hope you're soon feeling a lot better, it's no fun having severe flares, been there lots of times.
I hope all goes well tomorrow.
Thanks for your support. I guess the Enbrel has finally worn off and the Rtx has not yet kicked in. Hopefully the steroid wil tide me over.
Did you not get a steroid infusion prior to the Rtx going in? I have been on Rtx very successfully since 2016. I don’t take it with Mtx.
I am given oral paracetamol & antihistamine & then a steroid infusion before the Rtx drip is started.
I’m not normally prescribed steroids because I have weird reactions to them but for a few days after my steroid infusion prior to Rtx I am full of energy and no muzzy head ...I have just had my first flare since starting Rtx....I tried (with rheumatologist’s agreement) to lengthen the period between infusions & it was not successful....so back to 6 monthly.
I hope your second infusion was more successful?
I did have the piriton and the steroid before the first infusion but for some reason the effect only lasted a few days. I'm hoping this one will last a bit longer.
The pre infusion is a small dose of steroid...it is only meant to stop any nasty reaction during the actual infusion...it’s not like the oral Pred you might take or a long lasting Depomedrone or Kenalog injection that you get for a flare. Speak to your rheumy nurse.....she will know the exact dose & will know if you can be “topped up”.
Stick with the Rtx if you can....I have found it the least invasive drug I have been given in 20 years...no pills to remember to take ...& I only have a couple of blood tests between infusions....I really hope you can get settled on it.
Yes that sounds very probable. Hope the steroid helps and you soon feel the benefit of the infusion.
At least you can chill in a comfy chair tomorrow with lots of goodies to munch on. Hope it goes well.
Thanks, just back from 6 hours on an uncomfortable bed. Feeling a bit drained, but hoping that things wil improve from here on in
Hi, I’ve been in Rituximab for nearly 5 years. It sounds like your flare-up may be because the Rituximab hasn’t started working yet. It’s supposed to take up to 3 or 4 months to kick in - for me it took a horrendous 18 months and a fantastic specialist nurse who tweaked things so I could have a third cycle. Unless guidelines have changed, if it hasn’t worked after two cycles you’re not allowed more. Thank God I was!!
So has it helped me? It’s been a life changer for me and for several others at an NRAS meeting I attended in London 2 weeks ago. I’ve still needed surgery and am facing two more ops due to RA, but I’ve got a very erosive form of it. Obviously it’s not a cure (if only there was one!), but I’ve not had a major flare since it started working. I’m still in some form of pain 24/7 and have had to give up 95% of my work, but the thought of not having Rituximab any more scares me to death!
Keep positive and let’s hope it kicks in very soon for you.
I'm not sure I'd have your patience, 18 months seems such a long time when you're in pain. I like you know I've got a good mix of RA and OA and have had numerous replacements as well as needing two new knees.
What did you use to manage the RA whilst waiting for the Rtx to work, was it just a long haul of steroids and painkillers ?
If I’d have been told it wouldn’t work for 18 months I’m not quite sure what I’d have done as I was very ill and not coping well at all. The flare also affected my red blood cells, so I was also under a haematologist. I lost one and a half stones in weight- I’m a size 8, so the drastic weight loss was also a huge worry. Very dark times with very dark thoughts. It was a case of literally taking one day at a time, visiting either my GP or consultant in tears practically weekly (I usually steer clear) because the pain was off the scale - and I’d had RA 12 years by then, so constant pain was normal, but this was worse than every flare I’d ever had put together!
I can’t really answer how I managed until the Rituximab kicked in. I worked my way through so many prescribed meds for nerve pain, muscle pain, anti-depressants to treat the pain etc and none touched it. During this time, I had to have surgery to my right foot and then exactly a year later, to my left knee - all due to the flare up. The only things that got me through were steroid tablets (the injections didn’t work) and morphine patches (Oramorph didn’t work), though I had to come off the patches as they started eating into my skin.
Looking back, I think not knowing how long was best for me. But it would have been nice to have known for sure that it WOULD work! At the meeting I was at in London, a consultant who spoke said how brilliant Rituximab is and is known for its great results. So stick with it - it’s responsible for giving me a great quality of life once again and I really hope it works for you too 🙂
I just had my 2nd once a month dose of IV Infusion Acterma & today my wrist flare is really really bad that I had to up my prednisone from 10 to 20mg! The first dose was half to make sure I did not have a reaction. Yesterdays dose was bumped up to 525 (whatever that equals)!
I am so sick of waiting to find the ONE!
The goal is to GET OFF Prednisone, not have to take MORE!!
Now have Cushingoid from 7 long months of nonstop daily prednisone to combat ENDLESS shoulder & wrist flares!
No but I’ve been itching like crazy
Have just started Rituximab joints really bad just now. Knees agony hopefully will improve soon. Think I might have to ask for another steroid injection. Worst first thing in the morning. Hopefully improve soon.
I go for my second infusion next Thursday. I keep dropping off to sleep probably amount of painkillers I am taking. Hopefully get a boost when I get this done. Was great for two days until the steroid wears off. Fingers crossed. So nice to know we are not alone with all this and can chat to each other.x
I started Truxima 2 years ago after Humira had stopped working after 12 years & after the first infusion I woke up the next day & my elbow was totally stuck at 90 degrees. I’d never had a problem with this elbow ever. They got a dr to see me before 2nd infusion who said I must see a consultant within the next month & not to leave that day without an appointment. The ward staff refused me an appointment & I was stuck like that for 3 months. Eventually arranged physio but it had gone by then. Luckily only happened the first time. I get wiped out after every infusion usually for a week or more. Total exhaustion. I only have a half dose now as they thought it was too strong for me.
Good luck x
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