Newly advised of being high risk for CV

ziggyblue
ziggyblue Member Posts: 13
in Coronavirus (COVID-19)

I have psoriatic arthritis and on 15mg methotrexate a week (per last 4 years) - just got notice today that I'm high risk and should follow shielding advice. I wasn't expecting that as didn't see arthritis on any coronavirus risk list, though it gets tucked away under the "other medication" bit.

So aside from frustration that I seem to have got the advice late compared to others, so been operating at risk for last few weeks, I wanted to ask how quickly others found they got added to relevant lists with superrmarkets etc so you can use online shopping (currently impossible in my area)?

Secondly, are hospitals still running blood tests for those on methrotrexate or are these on hold while hospitals so busy? Thanks in advance

Comments

  • Brynmor
    Brynmor Member Posts: 1,755

    Hi @ziggyblue and welcome to the Online Community.

    Letters sent to those at high risk from Coronavirus are going out over this week and will be arriving at different times for different people and places in the UK.

    You will be able to find all our latest advice from Versus Arthritis here: Coronavirus (COVID-19) - what is it and where to go for information

    I suspect that getting added to supermarket online shopping lists and whether your local hospital is still running blood tests will also vary around the country. I am also interested to see what the responses will be from our members to see if this is the case.

    Best wishes

    Brynmor

  • ziggyblue
    ziggyblue Member Posts: 13

    Thanks, Brynmor. I have since discovered I need to register at gov.uk as being in need of support, to then get added to the list govt passes onto Sainsbury’s. I don’t need any helpers or anything (which the page is prompting to understand), but without being on the list, I can’t book online deliveries which are now all held back for NHS and vulnerable people in my part of London.

  • Ploiz
    Ploiz Member Posts: 8
    @ziggyblue I was told by my GP last week id be getting a letter but still haven't received anything, they did confirm today I would still be getting one but I'm not sure when. I started isolating 2 weeks ago anyway shopping has been hard, we don't require to be on a list to use online shopping but there is no delivery spaces for 3 weeks! Lucky my partner works in a supermarket and is able to pick things up for us.
  • silverfoxxxx
    silverfoxxxx Member Posts: 131
    This is a problem for me as my Dr dislikes the rheumatology department and says anything relating to my arthritis should be solely dealt with by them so he’ll expect them to send me a letter I’m sure, he won’t even prescribe me my meds which really winds up my Rheumy team.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520

    I too have PsA and inject mthotrexate and humira plus have the free flu jab. I haven't had a letter as yet but it matters not: as soon as this kicked off my husband and me decided that I was to stay within the environs of the house and garden and until today I have. I went for my routine but necessary bloods (which was a much larger palaver than it needed to be) but that's it now for me until July, indoors it is apart from a turn around the garden. I suppose in some ways it's easy as I am retired, childless, have no immediate relatives within 100 miles and am used to being similarly compromised due to the PsA, OA and fibro, the only difference is that this confinement is to protect others, not me. DD

    Have you got the despatches? No, I always walk like this. Eddie Braben
  • CitizenErased
    CitizenErased Member Posts: 9

    I must admit this thread has worried me a bit but I'm glad of it - I started Cimzia for PsA a few weeks ago but prior to that was on Humira for 6 months. I haven't had the letter and didn't think i would considering the time that has passed but I guess it takes time to send 1.5m letters. We have been disciplined but I have still been going out for runs, walks and cycles (getting my 1 exercise in a day for the most part) - on Tuesday i went to the supermarket as I trust myself more than the wife to ensure i social distance and take all necessary precautions etc...

    I'm thinking now that I will just stay at home for the foreseeable. Ziggy/Ploiz, feel free to not answer this of course - what age are you and do you have any other conditions? i'm nearly 35 and don't have anything else - but I would have thought that if methotrexate counts as putting someone in the high risk category then a biologic would as well but then again, I'm no doctor!

  • Ploiz
    Ploiz Member Posts: 8
    I'm 26 taking biological meds and I have controller asthma
  • silverfoxxxx
    silverfoxxxx Member Posts: 131
    Just off the phone to my Dr’s and they have said that GP’s have nothing to do with the letters being sent out and won’t discuss my vulnerability with me at this time as it is being set by the government, can anyone clarify this, where are your letters coming from?
  • Eir23
    Eir23 Member Posts: 20
    They started sending letters out last week, as far as I'm aware they are still sending them. My GP called this morning to check mine had arrived and I was shielding.
    Siverfox - My friend has been added to the list by her GP to receive a letter,, I'm sorry to hear of the difficulties your having with your GP, but I believe they do have some responsibility to identify the high risk vulnerable group.
    I've been taking methotrexate injections and prednisolone for years, started Baractinib end November, which replaced Ciclosporin and Tocliximab. I have RA, PsA Scleroderma and Psoriasis.
    The letter is useful especially if you are working and worried about catching the virus in the workplace as states you cannot work outside the home so employers cant force you to work or dismiss you due to shielding.
  • ziggyblue
    ziggyblue Member Posts: 13

    Citizen, I’m 49 and have just the psoriasis and PsA - joint aches and pains, but didn’t feel threatened by Covid til the text saying I am on shielded list. As it stands, I think I will still need to go out to supermarket until I get added to govt and supermarket list, so can’t follow the guidance anyway... will be at home and on my own rest of the time, so all very boring!

  • Michelleho
    Michelleho Member Posts: 7
    My letter came from the rheumatology department at the hospital silver fox
  • Eir23
    Eir23 Member Posts: 20
    I've just had a second letter, this time from the Rheumatology Consultant.
  • silverfoxxxx
    silverfoxxxx Member Posts: 131
    Thanks for the updates, I’ve emailed the rheumatology secretary again and hopefully hear something back at some point, my original email also included a request for more meds but 10 days later and now very low I’m not holding my breath.
  • Salis
    Salis Member Posts: 3

    I declined Methotrexate on top of my biologic due to it effecting my liver and kidneys and so now believe that puts me in the high risk but not in the extremely high group who will be receiving letters (confirmation would be great). I did register at gov. site and received an email saying they will contact nhs and even if not on the extremely high risk list they would contact supermarkets with my need to have online shops.

    My biologics nurse had advised me to isolate a month ago as she advised that the psoriatic arthritis effected my immune system and then the biologic further, plus additional OA, fibromyalgia and my thyroid condition all indicate high autoimmune compromise. I'm sure that though high risk I would not be on 'the list' but like so many of us know the necessity to isolate. I currently have an available neighbour who has offered to help and hope that very soon the local volunteer systems will kick in but as someone who's still waiting to hear re volunteering to phone I know that may be some time coming.

    My very best wishes to all struggling with this. Do register, get in the system even if in doubt.

  • ajolly
    ajolly Member Posts: 59

    Hi @Salis

    Welcome to the forum and thank you for your post.

    I am glad you have a neighbour who has kindly offered to help and I do hope it is not too much longer until you hear from the local volunteer systems.

    Please feel free to take a look around the forum and join in where you feel comfortable.

    Best wishes,

    Alice

  • silverfoxxxx
    silverfoxxxx Member Posts: 131
    Just came off the phone to my rheumatologist, my extra email helped, although he did say his team find me difficult at times so he had to phone me himself 😬, they should just be more helpful and unfortunately the only way to get moved up the list is to be a pain sometimes otherwise you get left for months on end.... he apologised for this. He said I’m not on the shielding list but to ensure I’m isolating fully, I’m on Leflunomide and in a flare up.
    He also said he’d been on calls and understands there are varying differences between practitioners and the letters being sent as people are reading the government guidelines differently!!!!!! Surely they should all be reading them the same and is obviously the reason some are getting letters and some aren’t even on same meds.
  • zelise
    zelise Member Posts: 3

    Hi everybody, I'm so glad to have found this thread as it is so far the only place I seem to be getting anything like an answer that I'm searching for.

    My Rheumatology team seem to be AWOL and I cant get any answers from them and, Like a lot of GPs, mine seems to think anything to do with my PsArthritis is nothing to do with him.

    So I have PsArthritis and take 20mg methotrexate weekly, and inject adalumimab fortnightly, I have IM steroid every 12 weeks or so..... I seem to be flaring at the mo....

    I have not received 'the letter' or 'the text' but when I finally got through to the GP he was surprised and said he thought I should have.....

    On a quick straw poll would you guys be fully shielding with these circumstances?

    (I have 2 little girls that I share 50% coparenting with their dad... I live in a little flat with no outside space... he has a house with a big garden)…

    (I am an NHS Sonographer that has been told not to come into work as I cant be patient facing)…

    I think I know the answer :(

    Many thanks if anyone has any help at all...… I feel everyones pain, this is the most confusing and unsettling situation for everyone.... Stay safe xxxx

  • Ellen
    Ellen Moderator Posts: 1,841
    edited 7. Apr 2020, 10:09

    Welcome Zelise to the Versus Arthritis online community.

    I think you are wondering whether you ought to be shielding given your PsA and the medication you are taking. You are definitely not alone in struggling to get answers or even responses from your Rheumatology Team at the moment.

    Have you had a chance to look at this information from Versus Arthritis?

    https://www.versusarthritis.org/covid-19-updates/covid-19-assessing-your-risk/

    Given your job and employer's response I think you already do know what you should be doing...😕

    If you need to talk to someone in person, our free Helplines are open 9:00am - 8:00pm Monday - Friday on 0800 5200 520

    I'll leave you now to 'meet' some of the members and continue this discussion with them.

    Best wishes

    Ellen

  • zelise
    zelise Member Posts: 3

    Ellen, Thank you so much for the taking the time to reply.

    It really is appreciated :)

    Zoe

  • ziggyblue
    ziggyblue Member Posts: 13

    So it took 6 days to get letter confirming I should be shielding, but only provides generic information - nothing new.

    i registered with gov.uk, and was able to book online shopping deliveries with Sainsbury’s after about 3 days, but in week 2 I can no longer find a slot... no one actually contacted me from gov.uk, and unsure if I should be expecting a call

    my online risk assessment scores me only one, so I question whether I really need to be shielding

    so I will continue to work from home and maintaining isolation, but I have started to take walks outside (early mornings) to help joints and maintain sanity

    and I will have to go back to supermarkets again unless online deliveries become available...

  • KazandNoo
    KazandNoo Member Posts: 133
    Interesting to see it's not just me having trouble navigating the shielding question. I'm on prednisolone,the dosage of which scores me a 2 on the BSR scoring grid guidelines for Coronavirus shielding,and methotrexate which scores 1. Score of 3 is to shield No letter,rheumatology nurse advice line reckons because my methotrexate dose is low (due to cough and breathlessness with higher dose)that the methotrexate doesn't score a point! My doc says methotrexate is methotrexate and he thinks I'm high risk,no text or letter tho. He did say there's lots of confusion with the scoring,he seemed as concerned as I was. If I wasn't working I'd just shield anyway but work want a letter before they let me do this. Hope we all get sorted soon folks,keep calm and carry on,eh?xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520

    I recently received my letter, sent by my GPs surgery which was a surprise as they have nothing to do with my PsA meds but do deal with my asthma. It told me nothing new, I was already doing what it advised due to the early advice that anyone who qualified for a free flu jab was in more danger than those who don't.

    Advice at a time of crisis cannot be individual or specific, it has to be fairly general and down to the individual to weigh up the info and come to their own conclusion about the right course of action. I am not enjoying the limits placed upon me by shielding but things could be so much worse: it is worth doing and doing properly because this isn't about me and my preferences. I know I can be ill, not be aware of it and pass somethng on because it has happened but only (so far) with treatable things. Quite how I would feel if I killed someone by passing on coronavirus . . . . That is the issue at stake. DD

    Have you got the despatches? No, I always walk like this. Eddie Braben

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