Hi everyone,
I have just done my third infusion of Rituximab and was wondering if anyone else could share their experiences in terms of recovering after the infusion and if you have noticed it making any differences to you?
I am lucky enough to have had a week off from work recovering and must say I still feel a bit wobbly and headachey.
Hi JulezH,
I had my first infusion almost a fortnight ago. Next one is due early next week.
My doctor says I’ve coped well with the side effects but at times I’ve felt really poorly. Weak, sweaty, shaky, nausea, headache and sore eyes?!! And super fatigued!
Are these the things that you’ve experienced too?
I’m positively optimistic that this may be the treatment that helps to bring my highly active RA under control and give me back some mobility etc.
I know everyone reacts differently to drugs and I’ve always been one to ignore the leaflet and just take things as I find them but it’s good to reach out and to hear about other people’s experiences.
I makes me feel like I’m not alone 😊
All the best to you ♥️
I am exactly the same. I am glad that my side effects are milder this time but they are definitely still there. I heard one lady say she was planning on going into work the next day and I just don't see how that is possible. I have been having terrible guilt for being at home recovering.
Thank you for replying and you are definitely not alone 😊
Hello
I've had seven cycles of retuximab now, the first four about 8 months apart, now about a year apart.
I'm fatigued at the end of the day and the following day and have to take it easy. And it takes a 3 or 4 weeks to fully kick in, so I stay on painkillers, and start to taper the steroids as I usually have to take them when I start to flare and then waiting for a date for the infusions.
Ive not had any other side effects though. Just glad I can have it.
I hope you soon feel a lot better. I've found it a brilliant drug.
Going for my 3rd next week tired yes but I put that down to time it takes. Improving a different time part of body after treatment. Hoping left shoulder now. Good luck
Very weak and headache after the first dose but I normally dont get the headache with the second dose just the weakness.
I had my first IV infusion of Acterma and nothing happened to me.
Actually went right back to work after the infusion.
Still having bad flare and still need to be on 10 mg prednisone daily. Was up to 25mg!
The longest 7 month flare that moves from shoulders to wrists endlessly.
Seems nothing works for me. Tried so many already!
Hello.
Have been on Rituximab since 2008, so a long time! Has been a life-changing drug for me and has calmed down my very aggressive disease. The infusions have never been much of a problem for me but everyone is different. Only issue I experience is difficulty sleeping and being rather hypo due to the steroid given as pre-med.
Just a word of warning to everyone on this drug. Make sure you monitor your immunoglobulin levels carefully. Unfortunately I have developed Rituximab induced hypogammaglobulinaemia ie. my immune system is damaged and I now require immunoglobulin infusions to maintain my health. This was missed by the hospital and consequently from 2012 - 17 I suffered numerous infections including shingles 5 times! Only when I approached my Rheumatologist with this diagnosis that I had made myself did I receive immunoglobulin therapy.
Best of luck with the treatment.
Pam X
I'm about to have my 3rd treatment of rituximab not sure what to expect after my 2nd i had bad UTI which lasted for over 3 months so get my next treatment in early august
Just a quick update for anyone reading this, it has been a week now and I keep getting headaches and still feel a bit drained. I am at the point where I can cope going grocery shopping but I tried doing a bit of gardening and within 20 minutes I had sweat through my shirt and my heart was pounding. I think I am going to keep taking it easy and see how I get on.
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