rutuximab

[chinpolo]

hello can I ask if those of you who are on rutuximab and have unfortunately caught covid recovered well.

I have asked a question very similar in the past and I think it was said that immunoglobulin can be checked to assess immunity levels. I asked my rheumatologist about this and he said it has to be 5-6 months after last infusion. I also asked in his opinion how he feels I would fair due to rutuximab and depletion of B cells. His answer was lots of info is posted, how accurate it is and also how helpful it is is somewhat variable in his opinion. I think he is being evasive as people who post on this forum are talking from experience.

I also asked about evusheld and he said he did not think it was available in this part of the country. Has anybody who lives in England been able to access this vaccine.

Take care and stay safe

[bpeal1]

Evusheld isn’t available in the UK. There are doubts over how useful it is as it was developed for the Delta variant and most infections are now Omicron. However, tests are continuing so it may become available.

The antiviral treatments have been shown to work well against all variants.

I caught covid 3 weeks after my last lot of Rituximab. I felt pretty rough and stayed in bed for a few days but never so bad that I felt I needed further treatment (I started Paxlovid 24 hours after testing positive and had 4 covid vaccinations at that point). However, one thing I have learnt about Covid is that it seems very random and there are so many variables in how vulnerable people are. So just because one person on Rituximab experiences Covid one way doesn’t mean anybody else’s experience will be the same!

[bpeal1 in reply to bpeal1]

You may find this video interesting. It discusses the effectiveness of Evusheld and the antiviral treatments. youtu.be/g8pC_bOu4fA(Not working as expected?)

[Lolabridge]

Hello chinpolo.

I'm sorry I cannot answer your first question as although I'm on Rituximab I've not caught Covid yet (and I'm trying very hard not to!). Hopefully someone will answer who has been in that situation. I hope you have managed to get antivirals quickly and will soon feel better.

Sadly Evusheld is not yet available in the UK as the government has not purchased any despite the fact that it was approved for use here by the MHRA in March 2022. It is already available in many other countries though (more than 30 I believe). In the USA it is given to all Rituximab patients.

I belong to a campaign group that is lobbying our MPs to try to get it here. There are more than 500,000 people that are desperate to get it to protect themselves from Covid for whom the jabs have not worked and who have various serious health conditions . The standard reply we receive is that more testing of the drug is being done against the new variants although there is scientific evidence already that it is effective!

If you would like to help us with the campaign either join the group on FaceBook and/or Twitter. Here are the necessary links.

facebook.com/groups/692949675108155

twitter.com /evusheld4theuk

[AgedCrone]

No..your rheumy is not being evasive…..I have been with the same rheumy for 15 years,& I do know he tells me the truth as far as he believes it.Google your question & you will find answers from doom& gloom to all went well.

I have no antibodies…& I am being advised to go ahead with my Rtx infusion in September…after a vaccination last month.

But that advice only applies to me….given by my doctor who knows my clinical history & present condition.

The most common reply is having a Covid vaccination too soon after a Rtx infusion can cause problems…but if you read to the end of each case…most subjects who did badly, had other serious comorbidities to contend with…as well as catching Covid.

Your rheumy is right that Evusheld is not given in the UK at the moment as a prophylactic…only in some cases as a treatment….until more is known about all the Covid variants that are appearing.

I continue to take as much care as I feel I need…& don’t weaken my defences worrying about something that will hopefully never happen.

[chinpolo in reply to AgedCrone]

Thank you for your reply. My husband has had melanoma and also bypass surgery. We take all the precautions we possibly can eg wearing masks whenever I shop, work etc. When we go for a coffee or lunch we sit outside always. I am thinking if you know you have no antibodies then perhaps you have been tested which is what we were hoping my husbands rheumatologist to test for. Nice to read you have such a positive attitude. Stay safe

[AgedCrone in reply to chinpolo]

Yes my rheumy had the anti body tests repeated because I’d had bad reactions to my first two AZ vaccinations….he doesn’t seem that bothered…he still tells me my age is still my worst enemy….. so as there is nothing I can do about that …I am just doIng what you are doing ….beIng as careful! as possible, but still leading a good life.

[ks1966]

I too take Rituximab and had Covid during the Delta surge. Almost all people who do not recover well i.e Long Covid are not on Rituximab. Your best bet are the antivirals available here. I was given Molunpravir and it worked very well and quickly. And by the way Omicron is so much milder than Delta. I know people who’ve had it and swear that it feels just like a cold. So between your vaccines and antivirals and the lesser severity of Covid I’m guessing you’ll be fine. Best of luck.

[trenarren]

Hi chinpolo, I've just had my 1st of 2 Rituximab infusions, my last infusion was in May 2021 and I caught Covid in May 22. I was a bit ill, but no worse then my wife who also caught it. Yes, I expect the long time since the last infusion meant that it had worn off a lot. I was also just starting to feel a few flares. I've also managed 5 vaccinations, the last one being in April. Just my experience in the pot!!

[Juliesb]

Hi. I caught covid 6 months after my rituximab infusion. At the time I had had 4 vaccines and didn't fare too bad. I tested positive on Xmas eve and didn't have any antivirals I think because of the timing of it. I'm not sure about long covid, I'm still very fatigued but is that covid, diabetes or RA? Not sure I can pin point it. It felt like a cold when I had covid and although I had antibiotics for a chest infection , it could have been so much worse. Thank god for vaccines. Good luck.