Retuximab and vaccines: Just had first round of... - NRAS

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Retuximab and vaccines

MissTia profile image
9 Replies

Just had first round of retuximab after a year, next one due 0ctober 12, (I have been on this drug for last 11 years) it's been a life changer. Now this time because it's late in the year been told I cannot have the flu jab or covid vac until January. Apparently you can have them two weeks before the infusion but have to wait 3 months after.. I do wish I had been given this information before. So now I suppose its more isolation until Jan,,Just letting people know,

Stay safe all.

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MissTia profile image
MissTia
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AgedCrone profile image
AgedCrone

If you have been on Rtx for 11 years….what did you do pre Covid about your flu vaccination? Were your infusion dates different?

The time gap for vaccinations was one of the first things I was told when I first went on Rtx in 2016…& it worked well until Covid.

I ended up having a gap of 15 months between infusions…it seemed timings went out the window to get a Covid jab into everybody…..& I had a Covid vaccination 9 weeks before an infusion…which was too close & the Rtx didn’t work,& I ended up on pain killers…..having not needed them for 6 years.

I made sure when I got my last infusion that I got it at least 6 months before Flu jabs started this year, & I’m having my flu jab next week….I’m not having the autumn Covid vax out of choice…but I will make sure I get my next Rtx infusion in April 2024…at the latest.

You need to speak to whoever plans your infusions to sort out your dates….or you will end up in the same situation next year won’t you?

MissTia profile image
MissTia in reply toAgedCrone

Hi, thanks for that info. Before covid I always had my rtx around April/May time,,but this time due to sickness ((me) then ill consultant, it got changed until Sept/October. Thanks for your input. You feel like your jumping through hoops all the time.(wish I could)Stay safe.

AgedCrone profile image
AgedCrone in reply toMissTia

Actually as you went a year between infusions…& survived OK (?)if you could drift ➡️⬅️your next infusions you should be able to plan around the flu jab.

There is talk of a joint Covid/Flu jab ….but I expect that is way off so concentrating round just Flu might be your best bet?

bpeal1 profile image
bpeal1

Take advice from your rheumatologist. The Covid vaccine programs ends on 15th December so ask if it’s worth having it then rather than waiting for the spring booster. I intend to ask my rheumatologist for her opinion. I have Rituximab every 6 months and fitting vaccinations in is always difficult, and sometimes I have to go for less than optimal spacing and hope some protection is better than none.

AgedCrone profile image
AgedCrone in reply tobpeal1

Yes of course definitely take your rheumy’s advice…..and read the latest research ….there are some scary consequences if you have a vaccination too soon after a Rtx infusion….too soon now seems to be anything less than. 6 months.

However as most people now seem to have only oneRtx infusion …I switched from two about two years ago & have found no difference & are leaving longer gaps ….. it should be easier to plan.

bpeal1 profile image
bpeal1 in reply toAgedCrone

Unfortunately for me I’ve tried switching to one infusion and tried leaving longer gaps but neither worked for me. Rituximab works well but only if I have 2 doses and don’t leave it longer than 6 months (even leaving it a week longer causes me to flare). Therefore I’m never going to have a 6 month gap after Rituximab to get vaccinated and with Covid vaccines clinics now only running for a couple of months each time I’ll have to go with best fit.

AgedCrone profile image
AgedCrone in reply tobpeal1

Well as long as it works for you let’s hope your rheumy leaves things as they are.

bpeal1 profile image
bpeal1 in reply toAgedCrone

I’m fortunate to have an amazing rheumatologist who goes above and beyond to make sure I get it every 6 months. I consider myself extremely lucky.

Wafflefan profile image
Wafflefan

I received the same advice, had my first cycle of rituximab in July /August this year and told not to bother with the covid and flu jabs this winter, when I double checked after booking them. I was told it would be better to have vaccs before next infusion in Jan/Feb. I presume this advice is being given now due to new/further evidence that it's not beneficial or causes more issues for us. 🤷🏽‍♀️

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