After being advised of liver and lung problems attributed to long term use of methotrexate (10mg weekly subcut), it has been suggested I move from a combination of Golimumab/methotrexate to Rituximab alone. From a layman's point of view, apart from a persistent cough) my RA was under perfect control for several years on the original regime, but clearly there were underlying issues going on.
I'd like to know what experience others have had of rituximab: side effects, effectiveness, etc. so that I'm ready with questions to ask at my next appointment. Would just like to add that I have no possibility of using alternatives such as sulfasalazine, hydoxychloroquine, or lefluonides following previous allergic/bad reactions and am considered too old for JAK inhibitors.
Would really appreciate some help, thank you
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Lifesforliving
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I transferred from 25mg Mtx PW to Rituximab 7 years ago. I had already kicked out Sulphasalazine & Leflunomide.
Best move I could have made. Worst case scenario was four visits a year to the hospital to have the infusions. Once you are well settled on the infusion it can come down to just twice a year or if you take to it really well as I did , I now only have one infusion every nine months.
No pills, no injections just a blood test prior to each infusion. Sometimes I get a slight headache for a few days after the infusion and feel a bit washed out but nothing to write home about.
I’m about to have fifth RTX infusion - this time just one (previously 2x2 ) and am on monotherapy. It took a long time to work fully ( starting from a really bad flare) but has been really effective. Ive been more’normal’ than for years. And its been good to be free of weekly injections and pills
I’ve had no side effects other than feeling a bit dozy the next day. I’m touching wood as I say this of course.
hi this is just my experience so please don’t let it put you off….I too had to come off methotrexate after many years for liver issues.I’ve had various meds sulphasalazine hydroxychloroguine, leflunomide, benepali all with good results for a couple of years. I was then offered Rituximab and I jumped at the chance of no tablets or injections and just a few infusions a year. Unfortunately during my first infusion I had a bad reaction where my heart rate rapidly increased so they kept starting and stopping but managed to complete the infusion in the hope that my second infusion 2 weeks later was better. Sadly it was worse and an ambulance was called as my tachycardia got worse and the infusion was stopped so now been put back on injections but this time adalimumab. It was put down to just a reaction and all was fine after but it just didn’t agree with me. I was gutted as infusions seemed a great idea and I’d jump at the chance if another option was offered. Good luck and I hope it all goes well xx
Need to get a balanced view and your experience is important. Really grateful for you taking time to write, won't deter me but knowledge is vital, thanks
Hi, I was given Rituximab a few years ago, having tried many other treatments that either didn't work or had nasty side effect. Rituximab was brilliant for me - I had the best few years while on it, with no side effects. Since 2020, I've not been able to get it, first of all because the Rheumatologists thought it could impact on the COVID-19 vaccine, and more recently because my immunoglobulin levels are too low.
I'd love to be able to take it again and would recommend it, but I know everyone reacts differently. Good luck!
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