Rutuximab and covid: Hello my husband has has... - NRAS

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Rutuximab and covid

chinpolo profile image

Hello my husband has has 2 rutuximab infusions and a few days ago I read a post on this forum which said those who have had rutuximab and then catch covid has a high risk of not surviving which is very worrying. 5ere rheumatologist is I think looking for an alternative. I could have misread. Question is would there be anybody who could reassure me that this is not the case and that they also have had rutuximab and unfortunately caught covid.

Also has anyone had the evushield vaccine or know anything about it

Best wishes to all

36 Replies

If you would like support, information or just someone to talk to, our NRAS helpline is open every weekday from 9.30am to 4.30pm nras.org.uk/helpline/ 0800 298 7650. Or have a look at our website nras.org.uk. Kind regards.

I have regular treatment with Rituximab and have had Covid - and I’m still here! I had had 4 Covid vaccinations when I caught it and took antiviral tablets. I felt a bit rough for a few days (a bit like flu).

Rituximab does slightly increase your risk to Covid hence why the UK government has made extra vaccinations and antivirals available however, there are other things which increase your risk too, such as age, comorbities and uncontrolled disease. The factors are so variable you will need to ask your husbands doctor for advice specific to his situation.

Evushield is not available in the UK so can’t offer any information about it.

chinpolo profile image
chinpolo in reply to bpeal1

Thank you for responding as reading the previous post has created some worries. My husband has heart disease which he had bypass and 2 stents just over 4 years ago. We have been sent the pcr and told he is eligible for the antiviral tablets/infusion. Hopefully he does not catch it as we are extremely careful but I know of others who are as cautious as ourselves and still caught. I do know the evushield has been approved but I don’t think funded but wondered if it may be able to be given on a private basis. Again thank you for reply

bpeal1 profile image
bpeal1 in reply to chinpolo

Hopefully your husband’s rheumatology team can give you some reassurance. The other thing to bear in mind is that a lot more is known about covid now and treatments have improved a lot. There are far less people ending up in intensive care these days.

Jturner profile image
Jturner in reply to bpeal1

I am on infusions. My doc says I would be eligible for an anti viral med. I think that read you read is extreme. Who can predict who doesn’t survive. I am careful and don’t worry too much about negative stuff. That will get you ! Stay safe. 😊♥️

Rituximab does cause far greater susceptibility to any infection. I was in hospital with pneumonia in less than two weeks after my third round of six monthly RTX infusions but tested negative for Covid.Rituximab given for cancer is at higher doses so it may be that those patient groups are more likely to become far more severely sick if they develop Covid-19.

I notice someone says they had RTX, and Covid, and recovered. The more time there is after RTX and before any infections, the better. Best to wear a mask and take extra care whilst very vulnerable, especially as Covid-19 still poses high risk for those receiving RTX. I hope he remains well!

bpeal1 profile image
bpeal1 in reply to charisma

Unfortunately I got covid 3 weeks after Rituximab not the best timing! However, with the antiviral treatments I was ok - just felt like bad flu for a few days. I appreciate everyone’s experience and risks are different but Covid is not a definite death sentence! Many advances have been made in treatments and understanding covid.

Thank you. We do both wear a mask at all times when in shopping or out in public and we do not socialise in peoples homes, we always meet outside. Yes a person did reply to say they had recovered. Do you mean a higher dose is given to pts with cancer than is given for RA

Lolabridge profile image
Lolabridge in reply to chinpolo

It's good to hear you are doing what you can to protect yourselves from catching Covid. I'm doing the same as I'm on Rituximab too and so far have avoided Covid by being very careful, as advised by my Rheumatologist. It's especially important now it looks a new wave of Covid is developing since people mixed more freely over the Jubilee weekend and the new Omicron variants are more transmissible. The FFP2 or FFP3 masks offer the most protection to the wearer, so if you aren't using those do get some. I only go into shops at times when they are not crowded and ensure I keep a safe distance from other people.

I received a message from my Rheumy team today, sent to all immunosuppressed patients on their records urging me to get my Spring Booster vaccination, if not had it already. I'm getting mine on Saturday. It will be my 5th Covid vaccination although I know it may not work for me as the previous ones did not. Yes we are eligible for antiviral drugs if we get Covid because we are on Rituximab. Evusheld, the preventative drug, although approved for use in the UK is not yet available as the UK government has not bought it yet.

I have joined the Evusheld for the UK campaign group and we are trying to change that as we need it! One of the organisers has written to Astra Zeneca, the manufacturer, to see if it will be possible for people to purchase it privately, but have not yet received their response.

If you would like to join the Evusheld for the UK group you will find it on FaceBook and Twitter @evusheld4theuk

chinpolo profile image
chinpolo in reply to Lolabridge

I have just gone onto Facebook and joined. The status is pending. Hopefully I have clicked the right group as it said evushield for the immunosuppressed

Lolabridge profile image
Lolabridge in reply to chinpolo

Evusheld not Evushield!

Please join the UK group if you are in the UK.

Try Evusheld for the UK or Evusheld4theUK

facebook.com/groups/6929496...

AgedCrone profile image
AgedCrone in reply to chinpolo

Yes people with cancer on Rtx therapy can receive up to 10 times higher doses than we with RA receive & are much more susceptible to any infections.

charisma profile image
charisma in reply to chinpolo

Cancer patients seem to receive lower dose but far more often drugs.com/dosage/rituximab....

Lolabridge posted this link earlier, thought you may find it interesting too. nras.org.uk/2022/06/21/an-u...

Yes there was a discussion here on people taking Rtx & Covid….I think the outcome was that we are all different, & must all rely on our rheumatologist’s advice because there is no “one size fits all”.

Hi there

Lots of good replies here already but just wanted to reassure you. I'm on RTX, I've just had an infusion after a long gap.

No studies I've read come to the conclusion you've done, and I hope you've spoken to NRAS now to put your mind at rest.

Main thing is to make sure his vaccinations are updated, and then to take all the usual precautions, the sort of thing all of us are doing anyway.

It's easier at this time of year to socialise outside which is much lower risk. It's important to have some joy in life, and the fear of Covid can easily become overwhelming at times.

And yes, antivirals are available on the NHS and he'd be eligible I think.

Please be reassured and I hope you can park this particular worry :)

chinpolo profile image
chinpolo in reply to StormySeas

Thank you for reply. To be honest I have not done any studies on covid and rutuximab it was the post which I read a few days ago which worried me. I think it is true to say RA being autoimmune brings more vulnerability as regards covid and my husband was told rutuximab depletes B cells adding to the risk but all that said we have been taking the precautions which we always have as I wrote previous. My husband has had 4 vaccines which is inclusive of the spring booster so all up to date I think. I did speak with the RA helpline who reassured yes anti virals would be available due to rutuximab. Take care and thank you

I have had 2 ritiximub infusions and caught covid from my partner. I'm over it now and still have cold like symptoms of a bunged nose and cough but I'm doing ok x

Glad to hear you have recovered well

I've been on Ritiximab for 4/5 years and not one med person has told me that. I've been told to be careful after treatment initially for 3 months after as immune system low but nothing like you've read.The treatment makes you more susceptible to catch any cold any bug etc .

chinpolo profile image
chinpolo in reply to Bionic1

It was a post which was on this site I think by lollabridge? Which says about rheumatologist concerned re low immunoglobulins and thinking her rheumatologist has been perhaps advised to get onto another drug due to the high risk of not surviving covid and also maybe due to the expense and tying up hospital beds. Maybe I complete misread the post which I hope I did but it has brought some worries

Lolabridge profile image
Lolabridge in reply to chinpolo

No you didn’t misread it. My consultant has let me have Rituximab again (in May) to get my RA back under control but is keen for me to try a different drug next time because he worried I may become immune deficient with more RTX.

EULAR issued some press releases in early June after their conference with statistics on how well Rituximab users fared with Covid and they concerned me.

chinpolo profile image
chinpolo in reply to Lolabridge

Only just found your reply. Will have a read

Bionic1 profile image
Bionic1 in reply to chinpolo

I think it's more a case of being g sensible. If in doubt wear a mask.

AgedCrone profile image
AgedCrone in reply to Bionic1

I have been on Rtx since 2016,& so far have not even had a cold. Everybody’s risk is different, & if a clinician thinks you are particularly vulnerable they will have told you so by now.My vulnerability is my age….& as my rheumy says, there is no pill for old age so just take care!

Which is all any of us can do.

HiI have been on Rituximab for 14 years!( I would be interested to know if anyone else has had it this long.) It suits me well. I had covid at Christmas along with other family members. I took 3 weeks to recover . I had already had 3 covid jabs. I've since had a 4th and also another dose of Rituximab. I hope you find this reassuring. I realise everyone is different and react in different ways.

Best wishes.

chinpolo profile image
chinpolo in reply to louise-p

Thank you all of these replies are very reassuring to me

Lolabridge profile image
Lolabridge in reply to louise-p

Indeed I do! Thank you.

chinpolo profile image
chinpolo in reply to Lolabridge

Hi Lolabridge my questions re rutuximab and covid after reading your post were not a criticism of what you had written so please don’t feel they were as you were only reiterating what your rheumatologist thoughts were and it is good to get other peoples feedback who are in the same situation. Stay safe

Hi I caught covid in March on ritixumab when I rang 111 as soon as tested positive explained about my illness and ritixumab she said go straight to A&E sent me a text they took me in within hours I felt so poorly X-ray me check for clots and put me on a dripOver night my temperature was so high and dehydrated the next day I got the sotrivamab infusion life saving without he said I would of been on high dependency it literally starts killing the covid immediately I’m so grateful for this I still got a secondary chest infection and took a few months to recover but here make sure you test regular I still do and get that infusion as soon as possible I have taken so much care don’t know where I got it love jane

chinpolo profile image
chinpolo in reply to Hairbraid

Thank you for response and glad to hear you are recovering albeit slowly by the sound of it

With antivirals now we should b ok…well that’s my understanding 🤞🤞

Yes, I have had the Evusheld vaccines. If you have the Rituxen infusions, then you need to have the Evusheld vaccines. You first have to have your COVID vaccines and Boosters. It is given in your muscle area in hips with either 2 or 4 shots. I chose the 4 shots as it is less painful. The only side effect was pain in one hip for about 24 hours. It was given at my rheumatologist office but there is a website that tells you where it is available. Don't remember the site but just google it and you should find it. I have never had COVID but I am careful to try not to get exposed. Hope this helps.

chinpolo profile image
chinpolo in reply to Tiredpup

Yes it does thank you. I have been told it is approved in England but none has actually been used due to funds. Which part of the country do you live tiredpup? My husband has had 4 vaccines. We are happy to explore on a private basis if that is all which is available but I can’t seem to find any info. We are pensioners but will do what we have to as health is a priority.

ks1966 profile image
ks1966 in reply to Tiredpup

Hello. Can you please share with how and when did you take it. Thanks

I think Tiredpup is in the USA where Evusheld is widely available especially for PPatients on Rituxan (Rituximab). It is not available in the U.K. at the moment either through the NHS or privately. 😭

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