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
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:
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
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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
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.
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.
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
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Home alone
Rheumy says suspected Behçet's, but gp won't do anything!
Nicotine and it’s effects on my Behçet’s for the positive! 
Hitting the treatment glass ceiling....
