Covid without Rituximab - Any Similar Experiences

[Investigator1]

We’ll here’s a strange one! I was at the Hospital today having my 3 monthly bloods in prep for my Rituximab in November. Sat in the waiting area was a bloke who at the same times as me was starting his treatment of Rituximab, so general hit chat “how you getting on mate” that kind of thing and it just happens like me he got Covid earlier this year. As you all know I had the Monoclonal Antibody treatment and only mild symptoms. He told me (he lives up in the Dales) that he did a self test one morning and tested positive. He rang his specialist and in turn the NHS called him and said he was entitled to treatment. They asked about his symptoms and he told them they were mild, so they said “do you want to wait a few days to see how it goes”? now considering it would be an 80 mile round trip and he can’t drive he agreed. Now this is where his story is different to mine, I was asked the same but said NO! I want it ASAP. I had it. He didn’t, it didn’t get any worse, it lasted 14 days before he was clear.

When I went in to see my Consultant I asked if she had had any of her Rituximab patients who had caught Covid but hadn’t had either Antibody or Antiviral treatment and she said about half and they all got through it without hospitalisation apart from 1. We are dealing with about 12 people in total here.

I am as vigilant and careful as I was on day 1 of the pandemic with a few relaxations on travel. And if I caught it again Iwould take the treatment if offered. But aI wonder if anybody out there has got any similar situations. We were all told that Covid was a death sentence if we got it, before vaccinations and different variants and I don’t ever want to breed complacency but it does give a bit of hope.

PS. As posted last week, Evusheild will soon be available in the UK if your consultant refers you and of course you have to pay and have it done privately. I asked my consultant about it and she said she could refer me but was hesitant at the moment because of the lack of data re effectiveness on Omicron A/B. I also asked about the cost and was told and I add finger in the air very approximate £1000 for the treatment, £200 for administration, £600 for a Consultation and a further £150 for blood tests 3 months after the treatment so approximately £1850 and this is approximate very loosely.

Take care all. Stay safe and keep going this winter. Nick.

[Grizzly-bear]

Thanks for sharing, always nice to see a not so scary story!

For me I’ve been avoiding covid not necessarily as I’m worried I’ll die (I’m 33 so even though on rituximab odds are still quite good), but because I don’t want any more vascular damage on top of the damage already done by vasculitis. My body doesn’t need any encouragement to do damage!

[Investigator1 in reply to Grizzly-bear]

Hi Grizzley. And I think that’s a really wise assessment if I may say. I remember in the August of 2020 my GP said to me “eventually Covid will just be another virus you need to avoid” and I have started to think that way. As you know I had that Throaty Heady Cold before I went to Cyprus and it stuck about for a month. Wasn’t really uncomfortable just an annoyance. Nick

[Main1234]

hi Nick thanks for sharing this it does seem to be a positive story and we sometimes don’t hear those.

The cost of Evusheld is very expensive especially as there is hesitation regarding effectiveness.

[Investigator1 in reply to Main1234]

That’s right Main1234, I understand everyone’s frustration in the Government not procuring it I really do, and I share those frustrations, however even at 1k a shot it’s a lot of money for something that isn’t fully researched against variants. My personal view is that there will be other very similar types of protection forthcoming but from other companies that are a cheaper but more effective option and that is what they are waiting for. Nick.

[Mish-da]

hi interesting story. I have Rituximab every 6 months and up until last month managed to avoid Covid. I became poorly very quickly. Contacted 111 soon as I was positive highlighting I have no antibodies and was told I would get a call back but 2 days later after chasing them due to deteriorating I ended up being hospitalised. The doctor was umming and arring as to whether I was eligible for the antiviral treatment despite me saying my consultant has advised this.

It was only when I said I haven’t produced any antibodies from the previous 4 vaccines I was given 3 days of IV treatment. I was lucky enough to have been on the Covid trial so knew I hadn’t developed any antibodies. Some say it’s a postcode lottery as to whether we get the antivirals… I tend to agree. But when someone has no protection at all I think its important to get the treatment straight away. I may have not been as ill as I was if hadn’t have to wait.

Apologies if this wasn’t really relevant to your post but thought I would share my story 😌

[Investigator1 in reply to Mish-da]

Hi Mish-da it’s a really good post. It keeps us all on out toes.

[Investigator1 in reply to Mish-da]

Hi again Mish-da. I think you are right about a postcode lottery. I am very fortunate my consultant has taken ownership of the process from the beginning and said if I caught it to ring her secretary who then contacted NHS. The person I got from NHS was a bit stroppy with me because she said to wait a few days to which I replied “ I insist I have it ASAP” she replied that I couldn’t insist on anything and it was only her that could make the decision. I just said ok, if you want to play God with my life then fine the calls are recorded, but I would go back to my consultant. She changed her tune straight away and issued the prescription.