Rituximab : I’ve just had my 2nd infusion of rituximab... - NRAS

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Rituximab

Laceygreen profile image
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I’ve just had my 2nd infusion of rituximab and not had any benefits from it yet. Before my infusion I was on 15 mil but be told to come off them but as soon as I get to 10 I’m just breathless and no energy . Has any one had this drug and how long does it take to work and how long it takes to come off steroids.thank you

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Laceygreen profile image
Laceygreen
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Neonkittie17 profile image
Neonkittie17

Hi, Do you mean 15mg of oral steroids?

I think if you’re on oral steroids to try control the RA in the interim, then I think this is your second infusion of your first “duo” of Rtx treatment? Yes, it can take time to effect. Took 8 weeks before I felt a really noticeable improvement. Some smaller improvements though after 4-5 weeks. By then I was on a low steroid dose of 2.5mgs. Please clarify with your rheumatologist re tapering steroids as normally it’s very important not stop them suddenly. Or to alter the dose without discussing and getting approval from your rheumy.

It took me many months to taper the steroids even from 2.5mgs to zero . We are all different people/patients, but I feel this needs to be clarified by your rheumy to you. Hope you can speak to them ASAP.

AgedCrone profile image
AgedCrone

Some people do have to be very patient… …I started Rtx infusions in 2016…..& I’m sure it took a good few months before I started to feel any improvement… I wasn’t on any steroids …except the Methylprednisolone infusion given prior to the Rtx.I’ve even stopped that now as steroids don’t suit me at all.From what I read on here  waiting 12 weeks is not unusual before feeling any improvement.I do hope you soon start to feel better……once the Rtx starts working it really is worth the wait. 

bpeal1 profile image
bpeal1

When I started Rituximab it took 2-3 months before I noticed it working. I remember suddenly realising one day that I was moving much more easily and felt like I had much more energy. I’ve never taken oral steroids so can’t comment on that.

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