Covid vaccine & immune suppressed..: Hi, has anyone on... - NRAS

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Covid vaccine & immune suppressed..

RachelD1972 profile image

Hi, has anyone on immune suppressants and been double jabbed caught covid since being vaccinated ? After shielding for so long it’s frustrating that there’s so little info out there for those of us in this group. I know there are studies ongoing which will take time but guess I’m just curious.

31 Replies

I haven’t and I didn’t fully shield just was very careful when I went out. Are you still shielding?

RachelD1972 profile image
RachelD1972 in reply to KittyJ

No not shielding now. Being very careful when out and just following gov guidance.

No thank goodness as I’m on Rituximab. I think I’m rather lucky to live in a part of the country where rates of infection are low (at the moment). 🤞🏻Stay safe!

AgedCrone profile image
AgedCrone in reply to Lolabridge

From what I have read & from what my rheumatologist tells me- we on Rituximab are at no more risk as long as we time our vaccination to fit in with our infusions.

Lolabridge profile image
Lolabridge in reply to AgedCrone

Well if that is definitely the case then that’s good news. 🤞🏻

Hi Lola, hope you are well. 💗

The main issue as we know for Rtx patients and the covid vaccine was/is ... When have your B cells returned? We know it isn’t just B cells needed for an immune response but it’s a big part of it. I was told this by my senior biologics rheumy and biologics nurse ... As a Rtx patient’s B cells can fluctuate in their repopulation each time you have Rtx, it isn’t always a strict timescale when they return.

Some patients are fortunate to have more of a routine there. I used to be 6-7 months but have been 11-12. Most Rtx patients do experience a more regular regime. I’m having my B cells/immunity tested more regularly now, due to med side effects/Ig monitoring. Yes, we had to balance as best we could the timings of Rtx and the vaccines. Same for the flu and pneumonia vaccines too. Was reading an article where Professor Paul Emery from Leeds said this re flu, pneumonia and Covid vaccines and Rtx timings, along with a couple of other very high spec immunosuppressants used for RA. Prof Emery said he had seen some small trial results (USA mainly) but they are small, so the Octave and other larger trials are needed. x

Yes ok thank you. I hope my B cells had repopulated before I had the vaccine but my consultant didn’t tell me! I was just warned to be careful after my last infusion in early May.The Octave study should tell us more in due course. Xx

🤞🏻💗

The initial results of the studies underway say that it is very rare, and even rarer that this has serious consequences. Pretty minuscule in fact.

But is seems to be that the pattern is the same as unvaccinated people, so older, overweight , men with heart problems are more likely to suffer. Although tiny, tiny numbers.

I’m just getting in with my life as risk seems less than being hit by a bus.

Brushwork profile image
Brushwork in reply to helixhelix

I had heard that too.Getting on with life, with a little extra care and keeping travel to a minimum.

Fortunate to live in a low infection area (at the moment - but actually throughout mostly).

It is a balance and a personal decision, how much of a risk are you willing to take? While following the guidelines and current laws.

Can you point me to these studies? I’m really desperate for info on this. Thanks.

google.co.uk/amp/s/www.bbc....

The Octave study is one.. I guess if you search online there will be others. Like everything these things are taking time to get the results back.

Thanks. Yes I’m ok with that. Patiently waiting whilst explaining to others why I’m not hugging them.

If you google breakthrough covid you’ll find them. Or start from here

cdc.gov/vaccines/covid-19/h...

I haven’t heard of anyone but I do live in a lower risk place. I’ve never shielded and just adhered to the basic covid rules. Now I just get on with life as normal. Cases are going up since the latest variant appeared but I feel pretty safe having been vaccinated. It’s going to go on for a long time and as the vaccinated population rises it provides protection for everyone.

And it’s worth being aware that the new delta variant has different symptoms, a sore throat and runny nose. Makes it hard to distinguish from hay fever.

I haven't but a woman on my AS FB page said that she had caught covid after having both jabs, I believe she is in Essex. None of her close contacts tested positive. She was on cimzia.

I have had 2 jabs (Pfizer), am on Imraldi and mtx and have other immune suppression problems. My immunologist measured my vaccine antibodies last week and I have some so it has worked in me. Hopefully that means most people it will had a response and not suffer severe consequences if they do catch it.

RachelD1972 profile image
RachelD1972 in reply to Jacey15

That’s great, I also had the Pfizer and on azathioprine and Abatacept. Wish they’d run these tests as part of our regular blood tests for a little peace of mind.

I think they will do in time. x

Having shielded, but now double jabbed I'm mainly just getting on with life, but take care.I don't use public transport, or go pubs/ restaurants nor into big crowds and I maintain social distancing, always wear my mask.

The risk under these circumstances of catching Covid is teeny.....around 0.03 % ( early data from KCL)

Sheila_G profile image
Sheila_G in reply to Mmrr

I do the same but I live in Lancashire and the exponential rise is very frightening as this new variant is more transmissable. I feel less safe now than I did a year ago. I still go out but only walking in the country, which is beautiful, and I avoid people wherever I am. The very annoying thing is that we had none where I live and no-one with covid in our very big teaching hospital. This boils down to international travel and not closing our borders soon enough. x

Mmrr profile image
Mmrr in reply to Sheila_G

It is so frustrating to have come so far and the failure to close borders in a timely fashion is putting it all at risk.

Realistically what good would it do to know the answer? It’s far too soon to have any reliable data……and all the vaccine manufacturers of licensed vaccines will not release their research for a long while yet.As we keep saying everybody with RA reacts differently to the disease & the treatments we receive…..so even if there was research available & even if you read a double vaccinated person with RA had caught Covid…..there would be no way of knowing why.

In fact you could quite likely be more worried if you did read of cases?

All the vaccines given to people with AI diseases are keeping people out of ICU……which is a very good sign ….so all we ca do is take the sensible precautions we are all taking already, stop worrying & get on & enjoy the summer ….whilst it lasts!

I am wanting to know that too. I know research takes a long time but we really need to be hearing something soon. The fact that we do not know how much immunity we have is one of the scary things for me. I treat everyone as though they are carriers and that I have no immunity and will continue to do so until I hear differently, that way I know I am staying as safe as I can. x

Mmrr profile image
Mmrr in reply to Sheila_G

I read early information from Kings College London suggesting 1 in 3333 vaccinated people (0.03) caught Covid. The disease was less severe than in none vaccinated people. However the data does not explain the behaviour of the said people....were they at mass gatherings, in pubs and so on.

As a comparison : The risk of DVT in and immediately after pregnancy is 2 in 1000 women (0.2) ...I've had 3 children.

Sheila_G profile image
Sheila_G in reply to Mmrr

Very good point. Perspective is the order of the day. Thank you for that. x

Good morning. I hope you may find some information from the link below. Kind regards. nras.org.uk/2021/05/13/upda...

If you sign up to the Zoe app, (covid.joinzoe.com/about) you will get the latest information from the studies that are being done, both on Covid19 and on the vaccines. I fill it in every day and so do thousands of other people. I find it invaluable for getting accurate information.

Lolabridge profile image
Lolabridge in reply to oldtimer

Yes I do it too and have since March 2020. The information they provide (to the government and us) is very detailed.

See my separate post regarding my email to me MP on this subject - hopefully she’ll get a response from the Dept for Health and Social Care soon.

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