Hi all,
I am taking a biologic Hyrimoz (adalimumab), but am not on the government's extremely vulnerable list as I have not been written to by the NHS but I clearly should be as this drug suppresses my immune system, making me extremely vulnerable to the coronavirus. This means I can't get deliveries from the supermarket who are prioritising vulnerable groups and so on.
Does anyone know what to do about this?
Thanks to all of you
You can still register whether you’ve received letter yet or not
Although we are all vulnerable being on a biologic alone does not make you very high risk. Have you seen the risk stratification chart below ?
nras.org.uk/data/files/COVI...
I’m not sure if there is anything you can do if you’re not deemed very high risk. Maybe someone else will know more.
Just follow the rules we are all following, wash your hands, don’t go out,& don’t invite people into your home.
If you need help with shopping for food go on the NHS coronavirus helpline.
Hi Kitty,
Thanks for your reply.
As far as I can see I get a score of over 3 on that chart which therefore says I have to shield because I am now back on leflunomide as well as the biologic and also take 9 mg of prednisolone per day.
Corticosteroid dose of ≥5mg prednisolone but <20mg (or equivalent) per
day for more than four weeks
: 2
Two or more immunosuppressive medication*, biologic/monoclonal** or
small molecule immunosuppressant***
: Two or more immunosuppressive medication*, biologic/monoclonal** or
small molecule immunosuppressant***
:2
This is the simplest table to check how you have been assessed (same as NHS strategy just laid out better). A single biologic drug is not considered high risk unless there are other factors so depends what other drugs you are on.
rheumatology.org.uk/Portals...
Sorry to jump in! I had full cortisone injection 4 weeks ago, I want to say 120ml?? Can’t see a scoring for that on the chart, any clue? (I’m on benapali as well) Anyway, i completely understand your not a health professional and so on but I’ve had excellent feedback from you years past ☺️
My husbands a specialist paramedic and covered shifts away from home all week and we can’t decide if he should stay away until testing kits arrive (or at the very least PPE!) ...
it took about a week to work and I know my immune system is very low as I feel so much better (typical)
I’d appreciate any thoughts, and hope you are well (glad to see you’re still here, haha I mean at HU not just ‘in spirit’ 😂 )
Err on the side of caution...and if you feel fragile then you probably are. So sorry hubby, but best stay in the garden shed for the moment! Unless of course you can adapt the house so he washes as soon as he comes in and then keep away from you and sleeps in another room etc
The famous letter that many have had gives some guidance on this, it’s here (template)
rheumatology.org.uk/News-Po...
I’m always late! Thank you for above 🙏 as it happens I’ve just been tested after being ill for few days (I’m back on to see others covid experience)
And did you have it? And how do you feel now?
Waiting for results, could be hay fever! But fighting something, I’ll keep you posted but can’t see posts of anyone else having it...
Yes I’ve had it and glad to say I’m one of the lucky ones! Wasn’t nice but I’ve had worse ☺️ Panic over for me, feel for others as the anxiety of awful
Go online to the nhs Corona virus information line...it’s all there.
Most letters not out yet, I was told by my gp today that each rheumatology department is assessing their patients for nhs england so it's a long job....
otherwise u can chat with your gp or rheumy department to discuss it , particularly if you are concerned about work.
Otherwise we are all basically staying in anyway and lots of community hubs and charities are around to help even if you are not " on the list"
Hope you hear soon x
I'm on biologics Cimzia, this wasn't on the list I'm told but my rheumatologist nurse has phoned me to tell me I'll be getting a letter, why not give a ring to put your mind at rest
Anyone who should be on the list but isn't (or hasn't received their letter by Sunday 29th March) should ring their GP. He will print a letter off and send it to you. Please don't ring before Monday 30th.
There are a lot of us, who thought we should be on the list. We are not, because we are not the MOST vulnerable, the SHIELDED are those who already have very serious heart or lung conditions or are on chemo or radio therapy for cancer.
Frankly, I am please to not be on that list.
However, I am self isolating for as long as it takes with the support of family and friends.
There are lots of local community groups who have set up a volunteer system to help those in self isolation - see if you can find one. Most have Facebook pages, or you could ring your local pharmacy to ask, or your local food/corner shop.
This! I’m pleased I’m not too. I’ve been at home for almost two weeks now too and will continue to be so.
I’m really pleased I’m not on the list. One of my team is and the extra precautions she’s told to take in her letter is a bit scary. She has Crohns and she’s in a flare hence being one of the 1.5 million to receive a letter.
There's so much confusion over this. Over on the AS FB page and NASS website (I have ankylosing spondylitis not RA) the advice is contradictory to say the least! People only on a biologic with only AS are receiving letters telling them they are extremely vulnerable and must stay in their homes. After days of stating only taking a biologic meant moderate risk, practice enhanced social distancing, the NASS website suddenly changed this to stay at home yesterday.
I've not received a letter but after asking on the FB page, no one under my hospital has received one either, so I suppose I can't rule out getting one yet.
I've only been out to walk the dog in a deserted field anyway but it would be good to know for definite what I should be doing!
Our local Resiliance team has set up a group to support all people with shopping etc. All done properly. They have a facebook page for info and have delivered leaflets with contact numbers of all services. They will collect and deliver groceries and prescriptions, etc. They also have a couple of people you can phone for a chat it you are isolated. If you have Facebook it may be useful to search for a group local to your area.
I contacted my GP surgery yesterday as I hadn’t received a letter but meet the requirements for ‘shielding’ as shown on the flowchart and criteria list on the NRAS site. I was told that there are different categories and depending on which one you’re in then you will get either a letter or text from either your GP or from NHS centrally. My GP practice hasn’t yet received a list of people they need to send letters to and that’s why I haven’t received a letter. I was advised to follow the guidance for the most vulnerable group. It’s such a huge administrative task it’s not surprising that it’s taking a long time to identify and notify people though so we just have to sit tight and take care.
Have a read at rheumatology.org.uk/News-Po...
I’m lucky I have made arrangements to be safe as possible I’ve been isolating for 3 weeks now. I’m so worried about my friend though she has a MAJOR heart condition and MS too. Unfortunately she works in the NHS in the pathology lab. She hasn’t had a letter at all either and has been told if she doesn’t go to work she won’t be paid. I know it’s difficult times for all of us but there are lots of people out there who are definitely on the top of the ‘high risk’ list who because they haven’t received a letter because of understandable delays are stuck between a rock and a hard place and much more vulnerable than they should be.
Just want to thank you all for your helpful comments.
I hated been on that list wished I wasn’t my cns told me I was because of ritx I went mad why would anyone want to be on it .
On list or not on list
Clinically vulnerable - c'est moi! I think. 
Biologic not working after a 2 week break
Cimzia...next on the list
