Rituximab

[Melaxx]

Hi, I had all the bloods done and mri scan and the rheumatologist is going to start me on this fusion in the next few weeks. Anyone on this drug? What’s your experience?

Thank you 🙏 x

[Willow1414]

Hi Melaxx .

I’ve just had 2 full days treatment on Rituxamab . I had a reaction straight away , blood pressure dropped and I passed out , then got the incredible horrible itches . Second day was better has given meds to stop reactions . I also had 2 half hour sessions on steroids by a drip . The steroids has reduced a lot of my swollen joints , but I do feel quite achy in my joints and feel it’s lowered my mood a bit . I had treatment about 4 weeks ago . Apparently still won’t be showing the full effects of treatment . I kinda think it’s the steroids that’s helped ??

Just be wary of the potential side effects , hope the treatment helps you . It’s expensive and is usually last resort after failing other treatment plans .

Hope you get relief from your symptoms with this treatment .

Remember your immune system will be quite low , and will need to be careful not to pick up any infections , they will give you a card stated you need urgent treatment for infections . .

Good luck and better health wishes

🦋❤️

[Bakbre]

Hi Melaxx

I’ve been on Rituximab now for 3 years and I’ve had no problems at all. It just makes me feel very tired for a couple of days afterwards but that is small price to pay. I had been on so many different medicines previously with no results and was really ill and very low, as nothing was working. Luckily I then got a new consultant as the old one retired and she immediately said she wanted to try me on Rituximab. Like you I was unsure but I am so glad I went ahead because it worked immediately! After being so ill and in a lot of pain for so long it was wonderful to feel well again.

Everyone reacts differently to this infusion but that goes for other treatments, drugs etc (for instance I was given Methotrexate and I was horrendously ill with it, so much so that I was taken off it within a month, most of which time I spent in the bathroom!).

I believe you should go ahead and try it. It is carefully monitored, as are you and I’ve been told that 85% of patients benefit. You have to do what works for you and what helps you. Don’t listen to anyone else who tells you horror stories, as it may well be that it just didn’t suit them. What have you got to lose? If it doesn’t work that would be really sad, but not life threatening - but if it does actually work you could feel well for the first time in a long time!

Good luck!

[Melaxx in reply to Bakbre]

Do you get sick more often ? ( ie colds , flu symptoms etc ) I’m worrying about catching infections a lot easily on this drug

[Bakbre in reply to Melaxx]

In reply to your question re Rituximab and Infections etc, I can honestly say I haven't had anymore colds, flu, or infections than I would normally. In fact if anything I seem to be healthier! I make sure that I get my flu injection every year and also the Pneumonia injection which is less frequent, (I think it is every 2 years). I also make sure I keep away from anyone I know who is not well and try to generally look after myself.

[Trixie01]

Hi,I’ve been on rituximab 5 years now, having the infusion every 6 months. During Covid my hospital dropped the two infusions down to one because of the massive risk of having no B cells if I caught Covid. They say they may stick to that going forwards but I can tell the difference from only having one, it’s not as effective for me. But it works really well for me generally , everyone is different though. One thing I do struggle with is that the day I have my infusion I cannot sleep at all that night, not sure if it’s the steroid they give you or the rituximab but I always plan a ‘I’m not doing a thing’ day for the day after infusion. It also keeps my blood pressure low for a few days and mine is naturally low anyway so I do get light headed for a week or so after.

[mainlyconfused]

I am just waiting to go in for my 3rd course of treatment with Rituximab. I ‘m given anti sickness beforehand and paracetamol to keep my temperature down. It has been a wonder drug for me. They take your temp every 20 mins or so during the infusion. Mine tends to get high, in which case they slow down the speed at which it’s administered or pause it until it goes down again. I was apprehensive at first, but I’d tried everything else and I couldn’t function with my lupus symptoms anymore. I haven’t had any side effects - more to do with the steroids you’re given with it. Good luck.

[Melaxx in reply to mainlyconfused]

What part of lupus symptoms improved the most on this infusion ? Thank you for reply 😊

[mahtee4808]

Hi Melaxx,Had my first infusion of Rituxan on 10/20/21 and will be receiving my second this following Tuesday. I was prescribed to help with rare shrinking lung syndrome caused by the Lupus and maybe relieve some of my Scleroderma symptoms. Overall, not as bad as expected. As others have noted, everyone reacts differently. I had a mild reaction (itchy skin, scratchy throat) but opted to continue without stopping. The day after I felt more energy then I’ve felt but then day 2 and the days following extremely fatigued, similarly to how I feel daily. Not sure what your daily symptoms are.

I think this is more of a marathon than sprint in that a true gauge of how this work won’t happen until 1-2 month has passed.

Tips for the day: if you easily get cold, bring a blanket, some socks-dress comfortable! bring your chargers, computer whatever will help you pass the time and snacks!

Hope you feel better!

[MercyT]

Hi there,I like the others have been on rituximab for years, I just get chills and sweating for a few days after. The consultants (well mine anyway), don’t seem to care if it helps us physically as long as it keeps kidneys and platelets etc in check. They disassemble the symptoms caused by anything serious like organ involvement from our day to day struggles like walking and nausea etc so sometimes I don’t feel any benefit but the doctors say it’s working. I hope this makes sense. Good luck X

[Hidden]

I have rituximab. This drug changed my life for the better. Before I had it I couldn't walk, severe pain and problem s with my organs. If you r consultant advises you to have it follow their qualified advice. Take care

[Finn523]

Hi Melaxx! I’m from the USA and I’ve been getting Rituxin infusions for at least six years. They’ve helped me out tremendously and I haven’t had any noticeable side effects.

Best Wishes to you! 🙏🏼

[Melaxx in reply to Finn523]

Thank you so much to all of you , always so helpful, I feel a lot better after reading your experiences, just waiting now for the date . I’ll let you know how it went . 🙏💕