Rituximab experiences?

[Heraripley]

Hello everyone

I had a consultant appointment today and after 6 months on Humira, which has had patchy results at best, I'm now having another flare. So the consultant has said next step would be to try Rituximab.

I've started to read up on it and it is a bit of a scary step. I tend to get anxious about side effects etc because I am a single mum with two young children and...well I don't want things to get any worse.

I was just wondering if anyone who has been on or is on Rituximab could share their experiences good and bad? I'm wanting to weigh up the potential risks against the potential benefits, so any information would be really helpful.

Thanks x

[sunnyweek]

Hello like you are considering, I moved from humira to retuximab. I've had 9 cycles of retuximab and its been wonderful. Everyone is different of course but I have everything positive to say about it. And I find it preferable to have yearly infusions than inject fortnightly. Some people need infusions anywhere from six months onwards. The most I've gone is 14 months. The more infusions I've had the longer it's's lasted. Of course with biologics you have to wait a few weeks before you know if it's worked but should be supported inbetween time.

I take sulphasalazine as well, the common Dmard is methotrexate but I can't take that. Some people just have the retuximab. This should all be sorted individually with your rheumatologist. I hope some of this helps. Please message if you want to ask anything and I'm wishing you well and hope your flare subsides very soon xx

[Lolabridge]

Hello. I was diagnosed with severe sero-positive RA in May 2018. I failed on each of the three DMARDS and my first biologic, which was the anti-TNF Benepali. During that time I developed damage in a number of joints.

I’m just about to have my fourth cycle of a Rituximab biosimilar and I have never had any side effects whereas I had many from the previous drugs I had tried. It has had a hugely positive effect on my health and enabled me to continue to live independently which I had feared may not have been possible in the early days. My RA is now fairly stable with little further joint damage and I’m hoping to get down to low disease activity soon.

My consultant chose it for me as I had developed some lung damage from the previous drugs I had tried and Rituximab apparently is less likely to damage the lungs. I understand it can affect some people’s sinuses but I have not experienced that. Because it is given in hospital as an infusion every 6-12 months it stays in your system for longer than the other RA drugs and does suppress the immune system. So be sure to have both your Covid vaccinations before your first Rituximab infusion.

I’m always guided by Rheumatologist and think he has found the best drug for me at the moment. If yours has recommended it to you I’m sure he has good reasons to have made that decision for you.

If you have any other questions or concerns just ask. Good luck.

[AgedCrone]

Been on Rtx since 2016.....with no nasty side effects at all....I now only need one infusion every six months, so as well as controlling my .RA it’s a very convenient treatment.I do hope it suits you.

The only slight problem is you have time vaccinations like influenza & now Covid19 around it.

[Silverpixie]

No side effects but made no difference to my ra. Now on tocilizumab which is great for me. Everyone is different you just have to work your way through the treatments until you find the one. Frustrating whilst you're going through it though.

[emmajj1971]

I had great results from rituximab but it took 3 rounds of treatment (18 months) for the full benefits, I found it didn't last 6 months until the next infusion at the beginning but it changed my life for the better x

[Heraripley]

Thank you all. I'm going to call my rheumy nurses today as they are always so full or information and reassurance. The opposite of my consultant unfortunately who definitely missed the module on bedside manner!Xx