Just wondering peoples experiences- not of the actual infusion - (I’ve already had mine 1and 3 weeks ago) but when it actually started working.
I know it is a 2 week to 3 month wait to see if it works average 8-10 weeks so it’s not about when it started working but the HOW it started working for people. Was it gradual? sudden? some pain relief? Complete pain relief? Some fatigue relief? Complete fatigue relief? I.e. what did it actually DO for you?
I know also everyone is different and it is a miracle for some and does nothing for others and so it would be really nice to hear actual experiences and not facts off information leaflets!
Thank you. Hope everyone has a good weekend x
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TTCC
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Hello, just a “brief” reply as my hands are hurting but if you do a search on here you will find lots of posts on people’s experienced with Rituximab...including mine! My first infusions took ages to kick in and then I only had a four week respite, the second round I had a good year on it with no need for anything extra apart from painkillers as it will not help damage that’s already been done. The third cycle has helped too but like I said it does not help damage that has already been caused by the RA....both cycles kicked in more or less immediately! I had a hand scan in January which picked up no inflammation which is a miracle as they’ve been active for 5 years so that the Rituximab working. Good luck hope it works for you! The only downside is that I’m on long term antibiotics for an infection that won’t go but if it helps the RA I can put up with it.
I found rituximab worked wonders for me. The only snag for me is I became very neutropenic about a month later so had to stop having it. I now have bilmimab infusion every 4 weeks instead. I still become a little neutropenic but not so bad .With rituximab I could tell when it was wearing off as started to feel a bit poorly .
I've been on RTX since April 2016.... It seemed to start to work gradually, & the first infusions lasted the full six months....I don't think I noticed any real difference for at least 2/3 months though.....I didn't need anything except the odd Naproxen. I was first diagnosed in1999, & thankfully have very little joint damage.
The following infusion seemed to last & worked well, but my April 2017 infusion started to wear off after 4 months. I had the next duo after 6 months - Oct2017 - & developed a cough/cold that took anti biotics to clear up ...it only actually lasted about 2/3 weeks.....but prior to RTX I didn't have colds, & had never had a chest infection or a cough before......Despite having the flu jab, I have now just had flu for three weeks....never had it before.......I don't know if it was bad luck, or the RTX affecting my immunity....but whatever I don't want it again!!! It was horrible....I still don't feel 100%.
Right now I'm grateful not to be in pain....so I'm willing to stay on RTX. I was due to see my rheumy last week but was too poorly to go. Next RTX due in May, so will have to talk to rheumy about future treatments,
As far as I'm concerned what's a few coughs & sneezes against pain that disrupts life completely? I would probably think differently if I had constant chest infections that could cause serious problems.
I really hope getting flu was just unlucky & hopefully won't strike again.
Hope your infusions start to kick in soon, try to keep occupied & don't overthink it......it will either work for you or it won't so relax & let it take its time!
I believe that my low immunity on Rituximab let a cough turn into something horrendous October to January. I never had anything like that before since being on the med from April 2014. Maybe just unlucky I got this vile bacterial infection. I blame taxi drivers! They cough all over you.
Hi. I had my annual infusion last November. There was no moment when I knew it had helped but gradually I'm more flexible. Takes around 12 weeks to kick in. My crp levels have dropped by 10 so all positive.
I started RTX infusions in Oct 2006 as part of a trial before it was in general use for RA in the NHS. The improvement was gradual - so gradual that it might not have been noticed, so I set myself 12 targets to try to achieve - silly things such as cleaning all my teeth with just one hand, sitting down in an armchair without using my hands, squatting down on my haunches (unthinkable at first!) etc. I achieved 9 after one month but I think that must have been the steroid injection because it went down to 3 again after another month. By February (4 months) it was up to 8 and I achieved all 12 by April (6 months).
I had two further pairs of infusions, one after 6 months and the third after 9 months as scheduled by the trial. That put me into remission for over 7 years. I had another pair of infusions in June 2015 and again in December 2016. Since then I have not needed any more. I am not on painkillers nor anti inflammatories but am keeping my fingers crossed (which I can still do) that this last set will keep me going for a while yet.
Does that help?
PS, I would add for information that, pre RTX, my ESR and CRP levels were well over 100 except for dips of a couple of weeks or so following steroid injections - and that was with up to 3 DIMARDS. Since RTX - well below 10, usually around 4 or 5.
I think that sounds really positive Richard. No RA drugs except steroids work overnight & they just mask problems, because eveything goes back to square one when you stop taking them.
My rheumy did mention I might move to annual RTX infusions & as I have no pain but silly little niggles like coughs & colds ....maybe that will be my next move?
Congratulations .....as you say let's hope you are set up for a good while longer.
Actually I know someone who had an overnight miracle on Simponi! Went to bed feeling like she was encased in cement and in real pain and woke up a different woman. Not seized or in pain. Also my own experience of Enbrel was that it worked within three hours of having that first one. I got up off the sofa and went upstairs to the bathroom without a stick and in no pain. Next day it was like pre RA. Excellent movement. Was at s concert leaping up and down two weeks later. Sadly I got an awful site reaction five weeks later then Rituximab started to wane so it was short lived. I have read from people posting on here that Enbrel is fast. Rituximab is generally not. Neither are most of the other RA meds I've tried.
Well done Richard! That's great you've got such freedom!! My infusion is tomorrow and they are 7 months for me at the mo but I think I could go longer but am still apprehensive as I was left 14 months once and went downhill rapidly. I was asked to go longer than 12 months despite being very inflamed in my hands and I got terrible joint damage so I'm reluctant to wait now. Maybe in time I will feel confident to go longer.
Thank you all so much - however much you read it is knowing real personal experiences which gives some light on what to expect especially as these are such positive reports.
Hi, I was put on Rituximab when I couldn't get on with Methotrexate. I had initial problems completing the infusions due to urine infections but once I completed 2 complete rounds of infusions I went into remission. Unfortunately RA has affected my lungs and I've been quite poorly since November with 2 spells in hospital. Because of this I've had to delay my infusion by a month and am now in the middle of a flare up as a result but I'm confident once I get the next infusion things will settle down. A bonus is that rituximab has been proved to be beneficial in assisting the lungs to perform better.. I hope you soon feel the benefit and things get better for you. My GP told me not to expect a miracle until I'd completed 2 rounds and, for me, that proved to be the case.
Good luck with your lungs Brenda and sorry to hear this. I just had a scare and a scan last month but all ok. I read too that Rituximab is said to help some lung conditions so hopefully you can resume your infusions soon. Take care. x
I've had 4 rounds of rtx all about 8 months apart, think it was a few months initially before I felt pretty pain free, I do tend to start getting niggles after 4 months but nothing a few pain killers can't deal with. I have to say the fatigue is still with me but I've learnt to manage it a little better, with 3 young children it's a challenge but I have to be strict on myself and just leave chores sometimes.
I've had no issues with my bloods on it but did get a horrendous sinus infection after the first 2 rounds- both times I had a bit of a cold before hand (I was due to go on holiday shortly after so needed to be 'well' to enjoy the holiday with the kids) so I now avoid having it if I have any sign of a cold as it was truly awful- and make sure it's well in advance of any holidays! I also take leflunomide and seem to permanently have a sniffly nose but that's fine if it all keeps my pain at bay!
Hi TTCC, I had a steroid injection in my knee a week after my first duo of Rituximab infusions back in April 2014 and so I was benefitting from that steroid shot all the time Rituximab was starting to work. So hard to tell at first whether steroid or Rituximab! As I know the knee injections tend to last five good months for me and relieve all of the joints and not just the one that's being injected, I knew that if when the shot wore off that I felt bad and seized up that Rituximab hadn't worked. I could feel something extra happening about week 8 even with the steroid knee shot working! I got a kind of release of muscles and tendons that were locked for years and felt less tiredness. I could walk with better posture. Then as weeks went by it just got better and better. It was wonderful to know it had worked. Just going for my fifth round of Rituximab tomorrow. Good luck and I am sure you will soon feel improvements. x
Thanks for your good wishes. Glad to hear rituximab is working well for you too. Hope you continue to stay as well as possible. I'm due my next infusion in 2 weeks so managing with painkillers until then.
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