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Re: Vaccines for Covid 19

Posted: Fri Mar 12, 2021 5:37 pm
by Thumps
When you say your GP is arranging for you to have a test, what kind of test do you mean? An antibody test?

My second shot is also mid-April, wondering if there's a way i can do the same.

Re: Vaccines for Covid 19

Posted: Mon Mar 15, 2021 1:01 pm
by Chris Wright
Yep, but when i spoke to my renal unit, they also said i could have it done there.

Re: Vaccines for Covid 19

Posted: Thu Mar 18, 2021 5:09 pm
by morzov
Interesting to read about people's experiences and views and that the emphasis is now moving to efficacy - in other words to what extent are we protected. That leads onto the question of what we would feel comfortable doing.

My take on this is that there are general studies taking place such as the OCTAVE trial but results won't be available for some time. Incidentally I tried to get on the OCTAVE trial in March when it had or was about to start but they said too late if you have already had vaccine. I pointed out that nearly all the CEV group had been vaccinated before 14 Feb i.e. the people they needed to go through the trial weren't eligible!

The other approach is to get an individualised antibody test. I lloked into this with an organisation called Tests4all or something like that but again as pointed out earlier these tests - which I understand were manufactured by Roche - are primarily for identifying antibodies developed as a result from infection. Thereafter I don't know enough about the science but I didn't go ahead.

So it's interesting to now read that some GPs and units are offering to do individualised tests. Be very interested to hear more details on that. Pretty sure my own unit will not be doing anti body tests - they have not even recorded which vaccine I had and when even though I volunteered the info. But if it is happening elsewhere then I will press them to do it.

Sorry if this doesn't really offer any great hope but I think we just all have to be careful until we have a better idea of what level of protection we have. For example I think I would be OK having a drink in a pub outside but I would not eat or drink inside basically because I would not feel comfortable without a mask. But then my eGFR is only low 30s so maybe I'm ultra cautious.

Re: Vaccines for Covid 19

Posted: Thu Mar 18, 2021 5:25 pm
by Thumps
I also pointed out to the OCTAVE researchers that they'd left their recruitment rather too late, but I suspect they were tied up in ethics forms. Real shame.

I'm so frustrated that we're hearing nothing about possible efficacy for us. I'm hearing news about over 70s and cancer patients but nothing at all about transplant patients. I wrote to my renal team about the possibility of antibody tests or similar, so far heard absolutely nothing back, not even a 'no'.

In terms of risk profile... I think I'll probably steer clear of closed indoor places for a while yet, but I'm going to hug my loved ones who have also been vaccinated when we're all in that position and trust my loved ones to be careful, as I've had to do ever since I got my actual transplant!

Re: Vaccines for Covid 19

Posted: Fri Mar 19, 2021 11:00 pm
by morzov
Spotted this online today. Study in the USA of SOT patients who have had one dose of Pfizer or Moderna vaccine and antibody response.

https://twitter.com/mkwillicombe/status ... 9475227656

Results are not great.

Re: Vaccines for Covid 19

Posted: Sun Mar 21, 2021 2:28 pm
by Thumps
Oh no. That is not good reading.

Re: Vaccines for Covid 19

Posted: Tue Apr 06, 2021 2:14 pm
by Thumps
So - had my second dose of vaccine brought forward, had it on Thursday. Properly knocked me back for about 3 days.

Good news is I did a private antibody test the day before my second dose and it looks like i've had a reasonably strong reaction to the first dose of vaccine which is great!

Re: Vaccines for Covid 19

Posted: Tue Apr 06, 2021 6:45 pm
by Skm
Thumps,

Which vaccine did you have? (I’m impressed with your antibody result).
Still awaiting my AZ booster. I’d love to know if it has worked.

Sue

Re: Vaccines for Covid 19

Posted: Thu Apr 08, 2021 11:31 am
by Thumps
I had Pfizer, and I also chose to take the calculated risk of cutting back my immunosuppressants by half the week after I had the jab (basically cutting out my evening doses) to give my immune system a fighting chance. I am NOT suggesting anyone should do this - it was a personal choice based on previous experiences of being asked to cut certain drugs while recovering from illness and having a very stable transplant. I've no idea if that's the reason I seem to be doing ok. I was asked whether I had previously had the virus or been exposed - all I can say is that if i've had it or been exposed to it, it was in an entirely asymptomatic way!

Re: Vaccines for Covid 19

Posted: Fri Apr 09, 2021 2:41 pm
by Skm
Thumps,

That’s very interesting. I don’t think I’m brave enough to reduce my immunosuppression like that. I may discuss with my consultant next time I see him (these telephone appointments just aren’t the same). It does seem a good idea. Like you my transplant seems very stable.
I’ve just (an hour ago) had my AZ booster.

Sue

Re: Vaccines for Covid 19

Posted: Sat Apr 10, 2021 3:13 pm
by Chris Wright
For what it's worth guys, i received a letter today saying that "My adult household contacts are now eligible to receive the COVID-19 vaccination."

This is because they are living with someone with "severe immunosuppression".

Gotta arrange through my GP.

C

Re: Vaccines for Covid 19

Posted: Mon May 17, 2021 9:03 pm
by dirverd
Hi all,

I used to post on here quite a lot (through dialysis, PD and Heamo) then I was lucky enough to get a TX from my brother 9 years ago.

I had a chat with Guys (my hospital) today about my worries about the vaccine’s effectiveness. What I was told was that while
our meds cause lower antibodies post vaccine than ‘normal’ people, a simple antibody test doesn’t give the full answer. They need to check how it affects our T cells, too. Research for this currently taking place.

They also suggested that we might need a booster in Autumn.

Obviously, none of this is set in stone, but thought I’d just add what I’ve been told.

Take care everyone.

X

Re: Vaccines for Covid 19

Posted: Wed May 19, 2021 12:38 pm
by Thumps
Thanks Dirverd, good to hear from you!

I'm hoping the OCTAVE study will give us some information. I'm fully expecting to need a booster shot later in the year.

Re: Vaccines for Covid 19

Posted: Wed Sep 22, 2021 4:50 pm
by Skm
Ok, so has anyone been invited for a 3rd primary dose of vaccination yet?

I guess this is being labelled differently as we can have it 8weeks after a previous vaccination (don’t have to wait 6 months).

Sue

Re: Vaccines for Covid 19

Posted: Wed Sep 22, 2021 9:46 pm
by Rik
no.. not yet..
but I know of other Tx patients that have..