New advise from the government today: Hi all just... - NRAS

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New advise from the government today

Castroll profile image
39 Replies

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

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Castroll
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39 Replies
Castroll profile image
Castroll

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.

Eiram50 profile image
Eiram50

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.

Castroll profile image
Castroll in reply toEiram50

How strange.

Take care

Eiram50 profile image
Eiram50 in reply toCastroll

I know . You too x

allanah profile image
allanah in reply toEiram50

I got one yesterday

allanah profile image
allanah in reply toallanah

I'm staying in anyway, I dont work , have loads of conditions and have done it before when flaring lol!

Eiram50 profile image
Eiram50 in reply toallanah

Do you know the purpose of it?

allanah profile image
allanah in reply toEiram50

No I'm on texts from gp anyway re appointments etc maybe that. The shielding letter if u get one will have website and phone numbers for those who can't get shopping etc

Eiram50 profile image
Eiram50 in reply toallanah

Thank you

3LittleBirds2 profile image
3LittleBirds2 in reply toEiram50

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

Mmrr profile image
Mmrr

It depends on the medication you take. See Victoria ' s pinned post from few days ago.

Castroll profile image
Castroll in reply toMmrr

Hi Mmrr

How do I find Victoria post

Mmrr profile image
Mmrr in reply toCastroll

It depends on the view you have ...phone...tablet...computer....but on the phone scroll down to pinned posts and Victoria from NRAS

helixhelix profile image
helixhelix

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!

Castroll profile image
Castroll in reply tohelixhelix

Hi

Yes that makes sense

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

helixhelix profile image
helixhelix in reply to

How old are you, are you generally in good health and do you have any other conditions? My rheumy is slightly more relaxed.

Mmrr profile image
Mmrr in reply to

Also whether on monotherapy/ combination therapy and over 10 mgs steroids a day will play a part.

wishbone profile image
wishbone in reply to

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.

KittyJ profile image
KittyJ in reply towishbone

Nooo don’t say that 😊

wishbone profile image
wishbone in reply toKittyJ

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.

KittyJ profile image
KittyJ in reply towishbone

It’s ok Wishbone, I’ve just seen the guidelines on Twitter and I shouldn’t be getting a letter. 😊

wishbone profile image
wishbone in reply toKittyJ

That's good. With my luck I bet baricitinib is on there?

KittyJ profile image
KittyJ in reply towishbone

rheumatology.org.uk/Portals...

wishbone profile image
wishbone in reply toKittyJ

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.

KittyJ profile image
KittyJ in reply towishbone

You’ve got to stay well to keep those hoards of women after you at bay 😊 You keep everyone’s spirits up so I’m glad you are doing the same for yourself. Stay safe 🤞🏻

wishbone profile image
wishbone in reply toKittyJ

Haha :-) You stay safe too.

Castroll profile image
Castroll in reply toKittyJ

So helpful thanks

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.

helixhelix profile image
helixhelix in reply to

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.

AgedCrone profile image
AgedCrone

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.

helixhelix profile image
helixhelix in reply toAgedCrone

Hmmmmm. AC, at your age I think you might be wishing on an empty star.

AgedCrone profile image
AgedCrone in reply tohelixhelix

I am an optimist hh....I can always lie about my age🧍‍♀️

KittyJ profile image
KittyJ in reply toAgedCrone

Get your wig, hat and dark glasses ready AC 😂

AgedCrone profile image
AgedCrone in reply toKittyJ

They are on the car seat ready to go!👀🦹‍♀️🧙‍♂️

Castroll profile image
Castroll in reply toAgedCrone

I X my fingers for you X x

Deniseelk profile image
Deniseelk

twitter.com/rheumatologyuk/... I think this now provides the clarity we have been waiting for!

KittyJ profile image
KittyJ in reply toDeniseelk

Yes, thankyou for this.

3LittleBirds2 profile image
3LittleBirds2 in reply toDeniseelk

This is really useful..thank you!!! Xx

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