Retuximab

[jopo280886]

Hi guys, Hope you all had a happy healthy New Year

Unfortunately I had flu, then Covid and what seemed like a virus

I just started Rituximab infusion 26th September therefore according to the information booklet I’m not meant to have live vaccines (flu, Covid) for 6months after, hence probably why I’ve come down with everything going around! I was wondering if anyone receiving this treatment did have flu/covid vaccines and how did it affect you? I can’t seem to get a hold of anyone at Rheumatology and my GP practice has closed their doors to only emergencies due to being overwhelmed with everything going around 🙈 Don’t think my body can take much more therefore I’m house bound till I can get some help as to what to do re vaccines. I’d appreciate any advice. This comes with Huge gentle hugs to all 🥰♥️

[joanneM200]

Hi Jopo,

I have been on Rituximab for about 2 years As far as I understand it, if you have vaccinations within 6 months they just won’t have any effect, the Rituximab would prevent them from working. Your body needs to be able to mount a response to the vaccine, and Rituximab is suppressing response.

I had a pretty big op last year and it had to be timed carefully to be in the middle of the infusions. ( I have infusions 6-8 monthly, so at 3 months) this was to minimise the risk of problems if I picked up an infection. Luckily I had no problems.

I would phone the hospital and ask to speak to the rheumatology nurses, the ones at my hospital are brilliant.

Good luck,

Jo

[jopo280886 in reply to joanneM200]

Aww thank you so much Jo, I know in the booklet it recommends 6 months after infusion, will try and get the rheumatology nurses today 👍🏻 Hope you have recovered well from your Op 🤞 Take good care of you.

Hugs Jopo xx

[joanneM200 in reply to jopo280886]

I recovered very quickly the Rituximab has made a world of difference to me, I am almost ‘normal’ most of the time, but the op was risky, so I’ve been lucky. That’s not to say it’s all perfect, but the benefits outstrip the negatives.

Vaccinations need to be timed, antibiotics cause thrush, etc…

[Yellow92]

Hi Jopo,

I am given Rituximab every six months at the moment, and my infusions fell around the time I was invited for the COVID jabs. I discussed this with my rheumatologist any his advice was to have the jabs prior the the infusion or as soon as possible as I'm told it takes around 6weeks for Rituximab to kick in.

I managed to get the last COVID jab about a week before the last infusion I had in October.

If I'm not sure about anything I call the rheumatology helpline, and they normally get back within 2 days. I wondered if you rheumatology department had something similar?

Hope this helps and you manage to avoid any bugs.

[SurferGuy in reply to Yellow92]

Is the rituximab infusion process still spread over several days?

[cathie in reply to SurferGuy]

2 weeks after the first infusion subject to blood tests a few days before each infusion

[SurferGuy in reply to cathie]

Thanks Cathie. So it's now just 2 infusions? 1st infusion then 2 week wait then 2nd infusion?

[cathie in reply to SurferGuy]

That's what happens here, in Edinburgh. I get mine annually more or less.

[cathie in reply to cathie]

Just noticed Lupus on your profile. I get mine for RA so I'm not sure whether they're the same. Each infusion takes up to 4 hours the second is faster although not amazingly so, its faster if you're on methotrexate for some reason. C

[SurferGuy in reply to cathie]

Thanks Cathie. I had this in 2018 and it may have changed as I had 4 infusions over 4 straight days. I'm seeing my consultant soon so will be discussing this.

[cathie]

I'm close to 99% certain that the covid vaccine isnt live. I've been on rituximab for a long time - 6+ years and had the vaccines whenever its offered. I'm aware of the depressing effect of rituximab on the impact of the vaccine - what I've seen is that it reduces the impact by about 60% not completely as Joanne says. The protocol here in Scotland recommends a gap of 2-3 months between the infusion and the vaccine. You are entitled to antivirals if you test positive and youre on rituximab - its still possible here to order tests and it takes 2-3 days for them to arrive. Hope this helps,

C