SO WORRIED WHETHER THE VACCINE WILL WORK!!

[Fluffypip]

I know that they are only just starting on the study to see the efficacy of the vaccines in immunocompromised patients but that could take months and what are we supposed to do while we wait to find out ? Just wondering if anyone has been told or read anything reassuring or hopeful. I'm so worried they wont work so well for us..

[PMRpro]

They will work to some extent - and an eminent rheumatologist told us on the PMRGCAuk forum today that we need to get whichever vaccine we are offered, no question at all. They may not work perfectly but they are extremely likely to improve our situation greatly - reducing the risk of serious disease. Get it and continue to take sensible precautions - and by the autumn the rates will be low enough to say we are pretty safe. By then they will have data for us too.

[Fluffypip in reply to PMRpro]

Thanks, I've had the Pfizer one so will just have to wait but that's really reassuring that the rheumatologist said they would work

[PMRpro in reply to Fluffypip]

None of them are 100% for anyone - but the risk should be greatly reduced. Every little helps ...

[Susieliz39]

Hello

I watched the covid vaccine seminar today on YouTube. There was a question section that discussed the efficacy of the vaccines in immunosuppressed people. It was reassuring to hear and as PM pro said, the scientists confirmed that they are of the opinion that the vaccines will be effective, what is in question at the minute, is how effective. A data study of 27000 people who are immunosuppressed for a variety of reasons is currently being undertaken. Hopefully, it shouldn’t be too long before some data is released.

The seminar can be viewed on YouTube. Previous posts contain the links.

Sue x

[Fluffypip in reply to Susieliz39]

Thanks ! Do you know the name of the study ? I can keep an eye out for it..

[Susieliz39 in reply to Fluffypip]

Hi

birmingham.ac.uk/news/lates...

[Susieliz39 in reply to Fluffypip]

It’s called the Octave study. I’ve just found this link on google that tells you more about it. 👍

[Redlady9]

Hi Fluffypip, I have Lupus and have just received a positive antibody test result following my vaccination in January. I was worried too as my immune response is at best unpredictable. Hope this helps to reassure you x

[Fluffypip in reply to Redlady9]

That's good news but could I ask how were you tested ? Which test did you have ?

[Redlady9 in reply to Fluffypip]

I am tested regularly as a health care professional on the SIREN study.

[Fluffypip in reply to Redlady9]

Ah ok, so it was the standard antibody test ?

[Redlady9 in reply to Fluffypip]

Yes, that's right x

[Ticklytoes24]

Hello. I have had the pfizer vaccine , and before getting this i called the lupus helpline as i was the same as you wanted re assurance that with a supressed imune system this vaccine will give protection , the answer was yes it will give SOME protection allthough our immune system is supressed if we feel side affects i.e , headache , body ache , heavy arm , thats a good sign that our immune system is still working and responding to something new! So yes go for it , protect your self and protect people hope tbis helps you 🤞🏻

[Paprika60]

My understanding is that we will have low immune protection from Covid and I think it basically means protection from having to be put into ICU or even death due to Covid.

And this means we still have to take all the precautions. So in summer I will finally dine out but not inside the restaurants, only in the garden sections as many won't be (or refuse to be) vaccinated, especially the young serving staffs. Hopefully we will have much more information once the study has been done. I have had both doses of Pfizer and have had very nasty reactions and still suffering.

[Jumper99]

Don’t forget that lupus patients taking immunosuppressants will probably be different to lupus patients not on them. Lupus patients have an overactive immune system so wouldn’t it be logical that they would have a strong reaction to the vaccine and therefore make lots of antibodies? Obviously this isn’t the case if you are taking immunosuppressants. So, yet again, we will probably all react differently to one another and differently to most others. Perhaps they could test us all to find out how well we have done in making the required antibodies? But even then we won’t know how long those antibodies will last. It is a complete nightmare.