LUPUS UK
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First rituximab infusion

Hi everyone not posted in a while , but have not been good at all 😢 feels like I’m ill every day 😢 actually fed up listening to myself moaning 😜 god knows how my hubby feels , have had kenalog injections into finger joints 8 in total on 1 day pain was horrific later at night , but now 2 weeks on it’s done nothing 😢 had my first infusion of rituximab yesterday and ended up taking a reaction when increasing the amount breathless and lightheaded, did receive another Iv of piriton and continued , I’m praying this works back 2 weeks for next 1 😢 feeling so low again can’t stop crying 😭 in bed just about to go to work and sooooo tired 💤 wish it would please give me a break every day is a battle 😢 sorry for the moans but I know you can all accept this as normal practice for some of us , have any of you had rituximab and feel any better since 🤞xxx

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Hi Harrisgran1, beginning of this week I had my second rituximab infusion, so waiting to see what it does, have been told it can take up to 8 - 10 weeks to start feeling the benefits, last week was really bad, this week not so bad, so don't know if its the rituximab working or that flare had just run its course. Good luck and hope it works for you

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Thank you lupydragon for your reply it’s much appreciated I’m feeling terrible today went to work and feel lightheaded and have chest pain were u ok after first infusion xx

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Hello, so sorry you feel so rubbish 🙁. I had my first rituximab nearly 2 weeks ago and feel quite rubbish too. I was flaring very badly at the time so can’t decide if what I’m feeling now is the flare, the rituximab reaction or a combination.

My consultant is fantastic and very confident in the power of rituximab. I have total trust in him so I feel confident it will work but does take some time. He was very clear about the need for rest so I’ve taken some time off work (although actually I’m not physically or mentally capable of doing much except lying in bed currently 😬🙁). Can you take some time off and get some proper rest?

X

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Thanks Melba1 I’m currently a support worker with adults with learning difficulties, and do think I should be very careful for infection reasons 😢 but as it’s a temporary position I’m so scared to lose my job , I’m only 25 hrs mon - Friday which helps but weekends are spent in bed but as you have said my specialist has said he’s sure this will suppress the lupus xx to add to matters I’ve had 2 heart attacks at 36 now 47 and 2 prolapse discs im really fed up being unwell hopefully this can and will get easier xx hope you’re treatment also is a success I’m sure it will be and take care xxx 😘

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Yes it’s so hard with work and feeling ill. Are you still having chest pain? I was fine during the infusion but that night felt like I was being stabbed in the left side of my chest (like when I’d had pericarditis before) and then have had palpitations and weird feeling since. Is yours like that?

X

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Thanks melba1 for your lovely comment, hope your well , yes fluttering of the heart , then definitely palpitations, it’s weird hopefully the result in 12 weeks makes this all worthwhile, next infusion Thursday 🙈 xx

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