Researchers Are Starting to Study the COVID-19... - Behçet's UK

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Researchers Are Starting to Study the COVID-19 Vaccine in Autoimmune and Immunocompromised Patients

rosshi profile image
5 Replies

hi everyone, I have researched & found this important information & I really think all Behçet's syndrome suffers & anyone with Autoimmune and/or is Immunocompromised conditions need to read this.

Here in the UK we are basically getting the run around, well it feels like it, I have found a really interesting; & dare I say very informative information?; well esp when compared to what we're NOT getting from our local & main govt.

It’s titled:

Researchers Are Starting to Study the COVID-19 Vaccine in Autoimmune and Immunocompromised Patients

creakyjoints.org/living-wit...

Getting a COVID-19 Vaccine: What to Know If You’re Immunocompromised; this Washington site gives a wealth of information that we just can't seem to get here:

creakyjoints.org/living-wit...

there are great sublinks too, I wanted to get this information out there ASAP, please share this with everyone far & wide as it seems pretty much what we are all looking

for, we have been left to our own devices for the most part to try & get help & advise & pretty much told to figure it out ourselves, I don't know about others but where I live it is like pulling teeth to get anywhere & it’s basically a repeat of what has been said a thousand times before.

At the bottom of the 1st page is an invite to join: Get Free Coronavirus Support for Chronic Illness Patients

ghlf.org/coronavirus-patien...

which doesn't seem to be American exclusive? I have had no luck so far in getting a response though but I'm sure somebody will & then will hopefully keep us all informed.

Anyway keep researching fellow Behçet's syndrome'rs & good luck!!! I really hope this info is helpful for many of you.

Stay-safe & watch this space...

rosshi

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rosshi

UPDATE

hello everyone, here is a link to .pdf .docx & audio files I have made of the study by the Washington university

1drv.ms/u/s!An-vf5Wo4-m-ik8...

there is a lot of informative information here

I hope this is useful for you all

if you find it of interest then please share it

take care & stay-safe

rosshi

swanseakev profile image
swanseakev in reply to rosshi

Hi Roshi ,

I've just been signed up to join a study looking at immunosuppressants and Covid. I'm currently having Infliximab infusions every 6 weeks and i also take Methotrexate injections weekly

The study is being run by Clarity UK, and involves giving regular blood tests and i also had an antibody test to see if I'd had Covid.....which was negative

I've now got wait for my vaccine and then let them know which vaccine was used and then i will have further Covid tests and more regular bloods taken

Think they are very interested to find how we react to the vaccine aswell as Covid itself

Alot of the Mab drugs are being given to covid sufferers in the UK to ease symptoms

Will be intresting to see what they find

Stay safe

Kev

rosshi profile image
rosshi in reply to swanseakev

hi Kev,, thanks for getting in touch, it will be very interesting to see how things pan-out, I wish you every success in this endeavour & with your Behçet's syndrome, I know a lot of people on immunosuppressant treatments & autoimmune conditions, will be hoping that the results prove to be positive.

I wish you well & thanks for the info.

ATB & stay-safe,

rosshi

ShortLady profile image
ShortLady in reply to swanseakev

Just out of interest, did they ask you to confirm your conditions by consultants letter, or from your GP? I no longer see a consultant and I noticed on my NHS record some fairly big omissions predigital. I'm not on immunosuppressants now, although was on high doses steroids and infliximab, methotrexate and Embrel before but its all on paper records. I have two different types of diabetes and pituitary failure,, chronic pancreatitis do probably not useful if they are affected by covid too.

swanseakev profile image
swanseakev in reply to ShortLady

Hi Shortlady,

The study group approached me as i was put on the extremely vulnerable list by two different consultants when this Covid wave first started

My Rhuematologist and Gastroenterologist, the fact i was on a mab drug and MTX made me eligible not the Bechets .......they're looking at the drugs interactions with vaccines and immune responses

Stay safe

Kev

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