Rituximab and Covid Infection - Anybody Out There?

[Investigator1]

Hi Everybody. As the question says have you experienced being infected while on Rituximab. Please don’t think it’s part of my plan, it isn’t but I ask the question because my Consultant said to me that a recent briefing she had received indicated that Rituximab patients were prone to be the most vulnerable group if infected by Covid. Note the word “Indicated”. But summer is coming, I need to get out more and with antiviral drugs, more doses of the vaccine things are getting better for us. I am unbelievably careful but want to get on with my life at the same time. Everybody else is. Any experiences would be greatly appreciated. Having an idea of the risk and consequences would help. Nick.

[Nadine99]

My husband with GPA is on 6 monthly Rituximab and caught Covid in Nov 21 having had 3 vaccines at that time. He was hospitalised but recovered.

[Investigator1 in reply to Nadine99]

Thanks Nadine

[Main1234 in reply to Nadine99]

Hope he is doing well Nadine99 as I understand he had been very poorly.

[Nadine99 in reply to Main1234]

Thank you for asking. He has recovered but he's certainly a lot worse off than before Covid. Breathing, joints and walking all impacted. He now has a mobility scooter and he's 65. Bless him, he just wants to get to his pension in June!!

[Main1234 in reply to Nadine99]

You have definitely had a difficult time . Sending best wishes for better times and pension in June .

[Grizzly-bear]

I’m waiting it out a bit longer to see if Evusheld becomes readily available in the spring/summer. All the studies I’ve read on rituximab show it isn’t an easy ride if you get covid (with a few exceptions), and there’s limited to no evidence on the antivirals and rituximab. However it is possible the antivirals are effective, I’m just finding it difficult to make those decisions at the moment without the data. There’s also apparently a late flu doing the rounds at the moment so would be worth waiting to spring/summer to see if there’s any more data coming out or more specific guidance. I’m personally still meeting family but wearing an FFP3 and goggles. I’ve stopped caring about how ridiculous I look!

[Investigator1 in reply to Grizzly-bear]

Hi Grizley Bear. I am just getting over a common cold, my wife caught it too. It took her a week, me just over a fortnight, we are both similar age and ilk fitness wise so that’s an idea of how things linger. I suppose the hard ride theory also depends on you basic level of fitness and wellbeing too. A friend of mine is a kidney transplant patient and is severely immune suppressed and has just caught Covid, he called his GP Friday and they have arranged an antiviral infusion for tomorrow (Monday) I think the message there is don’t test positive on a Friday! Not convinced how much some GPs understand the process. If it did happen to me I would ring my consultant or 119 I think.

[Grizzly-bear in reply to Investigator1]

I’d definitely call my renal consultant rather than my GP over anything covid related. GP doesn’t understand. I’ve read some accounts of people on rituximab being incredibly ill or dying and others having lingering symptoms for a while but nothing particularly bad. We’re such a small group in the grand scheme of things that it would be difficult to narrow down what other factors come into play to make covid better or worse. Unfortunately I had read that people with vasculitis on rituximab do worse than people with blood cancers on rituximab, but again it’s small sample sizes because most people on rituximab are likely shielding.

I’m personally going to wait to see if Evusheld becomes available then reassess things if it doesn’t. I lost last summer to being ill and would love a bit of a normal summer if I can get it!

Good luck for whenever you decide to ease up a little.

[PMRpro]

I imagine she is referring to the study that found that the response to vaccines by patients on ritiximab was either severely blunted or non-existent. I've seen it but not read it - but if a medic/scientist says "indicated" they usually means "showed" - which as far as I'm concerned is a solid statement: this is what happens. There is some evidence the B-cell response MAY happen once the B-cells recover (that is where rituximab acts) but a lot is linked to the temporal relationship between the rituximab doses and vaccination

mdedge.com/rheumatology/art...

ard.bmj.com/content/80/10/1355

[artists]

. The first time out after months of shielding before vaccines I caught covid . I had been having regular rituximab throughout. I have vasculitis, fortunately with covid l was only ill for about two weeks and made a full recovery . I have been told recently that rituximab is on hold because we are more susceptible to covid Personally I am feeling very ill and would give any thing for an infusion.

[NickJB]

I was on Retuximab and got COVID on 6/12, was admitted to hospital on 16/12 and moved to ICU on 20/12 before getting out on 28/12. Not the best Xmas ! Now about 95% recovered and consultant has swapped the Retuximab for Aziathioprine in case I get COVID again. So far so good in terms of the GPA symptoms

[Oldharry]

Hi Nick. I had Rituximab some time ago now and was hoping I might have got a bit of immunity back by now but no such luck I had a test recently which showed I was still suppressed. I have also just taken part in a study by Imperial college to see how much protection someone like me has against the Virus . The answer is zero - despite 3 vaccines. I suffered from Asthma since birth and not wishing to go on about all my conditions I have at one point been treated by 10 different consultants for various problems. I have been on edge for nearly 3 years. The only person I get near is my wife and she is very careful to wear masks and stay protected. I don't wish to appear negative but the worse news of all is that other people can just wander around carrying covid without isolating. My plan is and has been : Don't go inside anywhere if poss. I always have a PP3 mask under my hat. I wear gloves and a coverall if I go near a Hospital or surgery. We always wipe any packages coming into the house. This may all seem extreme but I know catching Covid would mean ''Goodnight Vienna'' for me.Now the better news. It's got to get better soon. I was given a package by the Gov that should I test positive I send in the result and they get me somewhere quick to receive Anti-Viral treatment. Secondly I read where a new drug has just been approved to protect people like you and I. My advice dont get in close contact with anyone, stay outdoors, don't go inside anywhere if poss.

Finally, these are only my own disciplines: Despite severe chest problems I try to stay fit( Up to 10,000 steps each day, 10 mins Weights, and 15 mins Excercise bike everyother day. Also quite a few Prayers.

Best wishes. Keep positive and just avoid close contact - there is hope on the horizon.

[eh66]

I asked my consultant about Covid. He said empirically life style appears to have an impact on your COVID response, as they had seen patients with high antibody levels still get hit. Basically how fit and healthy you are generally (other conditions like type 2 diabetes), what you eat and drink, how active you are etc. So basically I eat a variety of fresh fruit and veg, and exercise as much a my body will let me.

[Investigator1]

Well I have to say I do stay active, walking and cycling and I know it helps, my diet is low carb and high fibre and that definitely helps, I have been worried and still am about people walking around with Covid. Let me give you all an example. My wife resigned from her job 12 months ago because the store she worked in were told by our GP that she must work from home or in her own office to protect me. They totally ignored the advice and tried to bully her, saying she was a burden to others so she left. A few weeks ago a friend who is vulnerable and used to work with my wife at the same place called to say she had caught Covid due to the company totally ignoring any guidelines and when she called in to tell them she had tested positive they told her she had to come in to work. What do you reckon to that? I have written to our MP Rishi Sunak twice. Not even an acknowledgement. So that’s (now) what we are up against so yes we have to be careful and I have to say it’s all about people and attitudes but I felt a lot safer a year ago than I do now.

[Tbrz]

Hi, I am on 6 monthly Rituximab and due to being very careful have not had Covid. However, I did have an antibody test after my vaccines and it was not comforting reading as my antibodies were very low. I know it’s not the whole story to getting Covid, but with cases rates as high as they are currently, that the current strain is highly infectious and that the government has removed the need to isolate then I personally do not feel comfortable going out in lot wider society just yet. I hope that things will get better in the Spring/ Summer, but that just might mean things are even more hidden due to the government dropping free testing, ONS snd ZOE. Frankly, I think people like us are being left to take their lives in their hands every time we go out ☹️.

[Fleen]

I have 6 monthly Rituximab and caught Covid in November 2021. Now have long Covid. My rheumatology consultant won't let me have my next infusion as my IGG is falling to 2.4. Recently had a virus which has literally knocked the stuffing out of me. Don't know when I can have Rituximab again 😔.

[egre]

Hi Investigator, I had a letter from Rhuematology to say that I have a 70% risk of death should I have any Rituximab and catch COVID. I last had Rituximab in 2020. I was also told that I have an antibody response to COVID but no figures. I have Gpa and have no immune suppressants and am told it is stable and my decision if I want to pursue an infusion. Looks like I won’t pursue and will have to hope for the best!

[Investigator1 in reply to egre]

Hi egre, when was that? I was told something similar shortly in the summer of 2020 but since then I have been told I have a much better chance against the Omicron, I guess as we learn more we update and adjust.

[egre in reply to Investigator1]

The letter was a couple of days ago. I had the review a couple of weeks ago. The Consultant didn’t specify variants. As far as he was concerned there were all equally risky regarding Rituximab.

[Main1234 in reply to egre]

70% seems very high I wonder what research your consultant was quoting. We now have priority access to PCR and antivirals as well as prophylactic injection on the horizon.

This statistic could be extremely worrying for some. RTX has been a lifesaver for many. On a personal level I would prefer my OH vasculitis is under control .

[Investigator1 in reply to Main1234]

Can’t agree more, I think the consultant is over egging it. Of course we are all different and in different states of physical health however the current number of non CEV people who die from Covid is 0.28% of those infected, this since vaccinations, anti viral drugs, new variants has lowered dramatically. Now various trials have shown that those on Rituximab have a 75% greater chance of mortality. To me that equates to about a 20% chance or mortality. I am not an expert.

[Investigator1]

Wow! That’s a high figure, I will still be having my Rituximab though, my GPA level is only 9 from 170+ a couple of years ago and climbs fast if the treatment isn’t effective. So it’s a no brainier for me because I was told that if it rages like it did initially my kidneys will pack in.

[ZiggyDiego in reply to Investigator1]

I’m in same situation, but with eyes and lungs rather than kidneys if you see what I mean. I’ve been having rituximab every 5 months since 2019. Doctors say GPA is the biggest threat to my life. Currently they are wondering if I can go to six months for infusions, but I’m not sure how much difference that will make for covid. I flare every few weeks & have constant symptoms. Personally I’m doing outdoor stuff only. And waiting for Evusheld to be available as I think it’s our best hope (preventative antiviral). It has recently been approved but the government are withholding information about providing it, because the info is commercially sensitive.

[Mooka]

I’ve spoken to my consultant this morning and she said the outcome for vasculitis patients even ones on rituximab is much improved. She put this down to the vaccines and the omicron variant being less dangerous. She also said the access to the antivirals was helping enormously. I also asked about the antivirals on a prophylactic basis and she said that has not been approved yet. We hope that puts your mind at rest.

[Main1234 in reply to Mooka]

Thank you for sharing a more positive post. I agree with your consultant things are improving for us when you think of the last 2 years.

[Investigator1]

Well done Mooka. Great upbeat news.

[JAQUEKB]

I had Rituximab, four jabs with my last one in January. In the end of feb 2022 I got covid. I just fell unwell for one day then a cough for 2 weeks. Im not sure what will happen now as I am due to have Rituximab again. I will see my consult next Tuesday. Thinks are starting getting better. Let’s be positive.

[Main1234 in reply to JAQUEKB]

Thank you for your positive response. Hope your appointment with the consultant goes well. Will be interested to hear when your next RTX is .

[Investigator1]

Well done Jaquekb that’s really positive, it does sound as if it’s not an automatic death sentence anymore, really cheers me up. Won’t get complacent though. Did you get the antivirals?

[grindhaus]

Hi Nick, I'm on 6 month regular rituximab infusions for EGPA since 2018. In March 2020, in spite of many precautions, I caught COVID-19 from my husband. There were no vaccines then. He was sick for a couple of weeks and recovered. I spent a month in the hospital and a few weeks on a ventilator. I started a blog to describe what an acute case of COVID was like, as I remembered it. graciemaylive.wordpress.com