New research for immunosuppressed and covid vaccine

[ShannonB]

This is relevant to many of us:

medpagetoday.com/infectious...

[Hidden]

Thank you Shannon really interesting xx

[RachelD1972]

Thanks for posting this, I’ve been looking for data for a few weeks. Not the news we wanted to hear.

[ShannonB in reply to RachelD1972]

No - I was disappointed to see this but I’m glad to know it’s being looked at and think it’s important to know. I had a negative Roche antibody test three weeks after my first jab and had a really bad lupus flare too so I’m trying to learn everything i can as I decide what to do regarding the second jab. Rheumatologist is not recommending the second jab but I can’t figure out a way out of this without it.

I am also exploring paying for a TCell test on Harley Street to see if I can find it if I got any tcell response. Has anyone done this or looked into it?

[CSLO]

Many thanks for posting this.

Paul Howard, I don't know whether you'll see this but I wonder whether this could be publicly highlighted in some way. I know an investigative study is taking place about this exact subject here in the UK BUT results are not expected til the end of the year.

I wonder whether earlier second dose immunisation should take place for the immunosuppressed. Could this matter be addressed to SAGE or The British Society for Rheumatology?

Many thanks Paul.

[Paul_Howard Partner LUPUS UK in reply to CSLO]

Hi CSLO ,

We are beginning to hear some early findings from studies investigating the efficacy of these vaccines in people with underlying conditions and taking immunosuppressive therapies. I was part of an All-Party Parliamentary Group meeting yesterday morning and there were expressions of concern from a number of patient organisations and calls reducing the interval between doses for the Pfizer vaccine in vulnerable groups. I should say that this is still based on very early findings.

I think we may hear more on this soon.

[CSLO in reply to Paul_Howard]

Thanks so much Paul, always on the case! I have a friend who has cancer and interestingly had their second Pfizer jab brought forwards which delighted us all. Clearly felt it would be beneficial for him.

[Paul_Howard Partner LUPUS UK in reply to CSLO]

That's great to hear. I think that in some cases, consultants may have the ability to do this if they think it is in the patient's interest. If the evidence does suggest a change to the dosing interval is needed, then we hope it will be reflected in new guidance and recommendations.

[ShannonB in reply to Paul_Howard]

Hi Paul, thanks for supporting us. I wanted to point you to this as well if you hadn't seen it: medpagetoday.com/infectious...

I'd love to see some support in getting family members of immunosuppressed vaccinated including teenagers.

Grateful for your continued support.

[WinterSwimmer]

Thank you very much for this. I had already decided that I will need to have an antibody test after my second dose, which is on March 30th (Yay!). This confirms my thinking.

[loopy-lou]

Extremely interesting. Thank you for posting this x

[WinterSwimmer]

I am still going to have an antibody test. Catching a virus for me triggers a lupus flare. Each lupus flare takes another chunk out of me. It is not unrealistic to acknowledge that Covid on the top might well finish me off (or worse - leave my poor depleted kidneys on dialysis). Right now, I am well. I have adapted to a social life lived out of doors. I plan to stay on the planet a few more years and be well, and that is why I will get an antibody test.

[CSLO]

Thanks for your response Labmadfemmas.

Yep I realise that but it was the subject that I am keen to have raised and clearly there will be a whole lot more detail in the quoted study that may be relevant to us here.

I had my Pfizer jab in Feb which was a huge relief and eagerly await my second. It would be good to have an idea just how much of an immune response I might achieve but I doubt very much that we who are immunosuppressed will be able to find that out.

Even if we have a test privately it won't result in a change in vaccine action going forwards. We need the results of studies that might then influence policy and action.

[WinterSwimmer]

Someone who has had a kidney transplant might be taking mycophenolate...

[MrsMarigold]

Thank you for posting this study. I am notIn the UK, but the USA. So I’m trying to understand your medical system as I read

Different posts. I have chosen to not get

Vaccinated for the same reason the author of the article states: too little data or none

Yet on the immunosuppressed patients.

Last week my neurologist had the courage

To answer my question about the vaccination. Despite what is written in journals or advised by neurological society

She said she would not advise her immune

Compromised patients to get vaccinated

Yet because of the lack of data. I’m willing

To continue this hermit life until science

Proves the vaccine works for us. This is

A very personal decision that takes in account every nook and cranny of our

Lives/inside our bodies and out— in the world. I’m new to this forum and have not

Shared my diagnosis or my blah blah story

Lol: SLE, Hashimotos Thyroid, Raynauds,

Vascular disease , spinal degeneration,

And probably other diseases waiting to

Party with me😀 Living indoors; becoming

Accustomed to it is a difficult process. For

Me, I determined 4 things that really matter. The rest I leave behind. Anyway

I digress. When sufficient positive data is produced for us chronically ill, I will get

Jabbed as you say. Once again, thx for the

Info!

[miccika1]

I took an antibody test Igg for covid three weeks after the second dose (moderna), as I got concerned reading this article. I take mycophenolate 4 tablets 360mg per day which is highlighted in the article as the largest correlation to poor antibody response. Luckily, my response was very good, I got 6880 when positivity is >50.

[ShannonB in reply to miccika1]

That’s amazing news, I’m so glad!