Hi all just watched BBC news Sunday 22 march.
Are we all on the vulnerable list the the 1.5 million people in the UK that the government are talking about, or are we outside of tgat list, as the drugs we are all on are immunosuppressive ! ?? and will we get a letter next week from the nhs ??
Very worrying
I am already working from home and staying in which was advised.
Your thoughts please
Hi
Thanks for the reply
Yes let's wait and see.
But yes you are right others need to be more aware of others that are at risk.
Strangely, I got a text from the NHS this afternoon, directing me to their site for coronavirus and recommendations? Not sure why or what the purpose was exactly.
I got one yesterday
I'm staying in anyway, I dont work , have loads of conditions and have done it before when flaring lol!
They did say they would be following up the letters, with texts and phone calls, but you haven’t got a letter yet. I think it’s really good they’re doing this for high risk group..Hopefully it will become clearer why you received the text xx
It depends on the medication you take. See Victoria ' s pinned post from few days ago.
I don’t think RA alone makes you automatically in this category. It is most likely to be RA + age over 70 + one immune suppressant, or RA + other conditions + plus immune suppressant.
We just have to wait and see!
Hi
I saw my rheumatologist last Friday having spoken to him a few days before. He confirmed that etanacept (benepali) a biological drug was now on the list making all users high risk. I would assume that the other biologics would be the same as they work in the same way I think. He told me to self isolate for 12 weeks. He said that a letter or text would be coming out to all of his patients with advice. So pending the letter which I read should be received by 29 March if you are immune suppressed then self isolate.
The confusion seems to be whether your partner and members of your household should do the same. The government website says yes they should. My rheumatologist said yes. The bbc report tonight seems to say that social distancing is sufficient but that makes little sense to me. Hopefully the letter will clarify it.
I hope this helps a bit. X
How old are you, are you generally in good health and do you have any other conditions? My rheumy is slightly more relaxed.
Also whether on monotherapy/ combination therapy and over 10 mgs steroids a day will play a part.
I heard a government spokeman earlier who seemed to know what he was talking about, though of course some don't. Saying that people on "some" types of immune suppressants will be recieving letters. It wouldn't surprise me if etanercept is one.
Nooo don’t say that 😊
Sorry Kitty. It's not much more than a hunch I have about etanercept, but I do believe it's pretty harsh on the imune system . At least that's what an orthopaedic consultant once said to me about enbrel.
It’s ok Wishbone, I’ve just seen the guidelines on Twitter and I shouldn’t be getting a letter. 😊
That's good. With my luck I bet baricitinib is on there?
rheumatology.org.uk/Portals...
My hunch was right this time! I'm tempted to phone rheumy and ask if it would be a good idea to stop baricitinib and go back on hydroxy, which I was taking for approx 3 years prior to starting baricitinib. I stopped taking it because it suddenly made my tinnitus a lot worse. Think I know what they will say even if tinnitus wasn't an issue, and that is to carry on with baricitinib as I am self isolating so at low risk of catching the virus, which does make sense. I'm keeping in good spirits so far, but there's no denying what a difficult time this is.
Hi
I’m 53 . I’m fairly ok with no other major health issues. My rheumatologist was very clear and serious about it. I’m going with his advice on this as I know that I do not shake off infection very easily. The NHS won’t have the facilities to support us all.
Yes, trying not to overload the NHS is important. A local man here was told he mustn’t go into the forest to cut down his wood in case he injured himself. And we all have to go with our own medical team’s advice.
Probably not....but if you haven’t received the letter in a week...have a word with your rheumy nurse....she will confirm if you should be on it,
As you are already staying home,there is nothing else you need to do.
I have my fingers firmly crossed I am NOT on it.
Hmmmmm. AC, at your age I think you might be wishing on an empty star.
I am an optimist hh....I can always lie about my age🧍♀️
Get your wig, hat and dark glasses ready AC 😂
twitter.com/rheumatologyuk/... I think this now provides the clarity we have been waiting for!
This is really useful..thank you!!! Xx
You stay safe too.
