RITUXIMAB

[Kjmarsh]

Anyone had this infusion?? Nervous, but joints so bad need something else.

Start in 3weeks, so gotta make my mind up soon. Side effects worry me the most

Thanks x

[Jasmine234567234567]

Hi, my name is Jasmine. I did have the infusion once... although I never finished it because my neutrophils were to low so they stopped the infusion straight away. But they will do a blood test on you and then put a Canula on you for them to be able to connect the tube to it so the infusion can start. I don’t think there is anything to worry about.. the most to worry about is the boredom because I think you stay for days. 👍🏼 I give you good luck.

[cathie in reply to Jasmine234567234567]

You stay 4-5 hours

[Kjmarsh]

Thanks, I have had many infusions before, that is not what concerns me, but the drug itself and side effects

[AgedCrone in reply to Kjmarsh]

I have been on RTX since 2016.....only possible side effect is I have had a couple of colds.....I now only take the odd paracetamol & Naproxen.

For me it has been a life saver.

[Paul_Howard Partner LUPUS UK]

Hi Kjmarsh ,

You may wish to look at some of the previous posts about rituximab in this community to read about peoples' experiences with the treatment. You can find them here - healthunlocked.com/search/r...

[Kjmarsh in reply to Paul_Howard]

Thank you Paul, have read all responses, my mind us more at ease. I have SLE, with RA, clotting thingy, psoriasis. I am also waiting to chat to my Lupus nurse, which will also help.

[cathie]

I’ve had it several times. No bad effects but I do tolerate meds well. They give me a steroid with it so there’s an immediate boost. Yes the side effects are scary but rare. It’s really worked for me + leflunomide and I don’t need painkillers.

It takes a long time eg 4-5 hours, but I’m glad they’re cautious. And you’re well monitored.

[PMRpro]

You might find this interesting

lupusnewstoday.com/2017/03/...

All drugs have potetial problems - but they do look after you well when they use these new biologics which really are making a big difference.

[Sami1982]

I had this in 2016 for my ITP and Lupus I had it over 4 weeks and after 3 months my platelet count had risen and stabilised and to date I've had no relapse. I had no side effect from this apart from feeling tired for a few days after the treatment and like others I take medication well and I've only ever had bad side effects from steroids.

[Rach459]

Hi. I have rituximab infusions every 6 months without the steroids and i dont have any side effects at all. I was worried at first about having it but its fine. Ive been on it for 2 years now. Xx

[Maureenpearl]

I had this drug once in 2015, twice in 2016 and November 2017. I had oral Paracetamol, an antihistamine (can't remember name, brain fog) and a large dose of steroid via infusion before you have the Rituximab.

I usually fall asleep almost straight away because of the antihistamine (given to stop itching).

Sometimes I get very hot but they will slow down the infusion if you have any side effects.

At the end I sometimes have a headache, starts overheating and full of energy. I am usually told to go home and rest and not to start being active because that's the steroid giving me a false sense of hope.

I felt the Drug worked the first two courses I had and the last two haven't worked.

Hope it goes well for you Kjmarsh.

God bless.

Maureen

[Melba1]

Hi, I had 2 infusions 2 weeks apart at the end of this January. I am a ‘reactor’ to drugs (react badly to almost everything! 🙄) but had no immediate reaction to this. I did then, a few days later, have some problems with my autonomic nervous system and high heart rate but this was thought to be very specific to my type of lupus combined with my type of reaction to all drugs. They do monitor you very well.

I’m now 6 weeks post infusion and really feeling the positive results. No pain in my body at all - don’t think I could remember what that felt like because I’d got so used to the joint/ bone/ tendon pains. Much more energy (although still not pre lupus days sadly) no rashes, no ulcers, appetite has returned (too much maybe 🐷!) and my brain’s ability has returned so all very positive.

I was scared before the infusion as it’s so unknown but I think bad experiences are very rare, it’s ‘softer’ than some other treatments as just reduces your B cells and seems to have really positive effects in many people.

Good luck!

X

[lupusinflight in reply to Melba1]

I was so scared before I had Rituximab too! I think it’s because of certain lines in the Wikipedia entry 🙈 But it’s been life saving for me in more ways than I can count. Definitely think it’s a brain and mood booster too!! Because, as you say, it reduces the overall pain.

Happy to hear it’s working for you xx

[lupusinflight]

Good luck Kjmarsh 🤗 I have been on Rituximab since 2009 when I was an inpatient for three long months. Rituximab got me out and kept me out. I’ve had so many infusions by this point that my consultant feels she needs to be cautious about giving me more. From my side I’m not cautious about it - it works and I need it. Yes the side effects are real and need to be endured - but once you ride the wave of those, onwards to better days. Let us know how you get on? I wish you courage and luck xx

[Kjmarsh in reply to lupusinflight]

Thank you lupusinflight, the more positives I read, the less worried I am. However am still concerned for side effects, though I withstand most drugs well. To be free of the latest flare ups will be good