Corona Virus/covid 19

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  • MazFox26
    MazFox26 Member Posts: 9
    edited 29. Mar 2020, 13:33

    New to this but I have just looked at your info and it comes out as I don't need to Shield (taking one biologic and one DMARD for RA) but the NHS England's Advice to Rheumatologists, says that anyone taking a biologic is automatically at high or very high risk. Link below. Please feel free to check whilst moderating this comment.


    https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2020/03/clinical-guide-rheumatology-patients-v1-19-march-2020.pdf

    Thanks, M (confused!)

  • Michelleho
    Michelleho Member Posts: 7
    I spoke to my rheumatology nurse and she said my letter for shielding was issued not because I have just been diagnosed but because of the drug methotrexate. Apparently anyone on the drug has been sent a letter from my hospital but perhaps interpretations are varying. I would be interested to know if there’s anyone only on methotrexate that’s not received a letter with rheumatoid arthritis

    They have also cancelled my bloods and want them carried out by the GP as they want me to avoid attending hospital
  • Lily123
    Lily123 Member Posts: 1

    Hi, I’m new here, but have read Michelle’s post above about receiving a shielding letter. I got one from my GP today, which I was surprised about as I’d read the previous guidance and thought I was at moderate risk, looking at the tables shown here. Like Michelle, I have RA and on methotrexate but I’m not new to it, it’s well managed and I’m currently in remission. I rang my GP to ask and was told it’s because I’m on methotrexate, so seems they are sending shielding letters to everyone on methotrexate, like the comment from Michelle’s hospital. I’m finding it all rather confusing!

  • dreamdaisy
    dreamdaisy Member Posts: 31,520

    I think the issue is simply the methotrexate. As we know it controls disease activity by suppressing the immune system. Anyone with a suppressed immune system is more vulnerable to infections and maybe at greater risk because they are so slow to produce symptoms. I inject methotrexate and humira and have not had a letter from any source but don't feel I need one. I know I am more vulnerable, I've been playing the immuno-suppressed game for over twenty years and, thanks to asthma, have had the free flu jab every autumn (another indication of being at higher risk) since that was introduced.

    These are rapidly-changing times so yes, it can be hard to keep up with the flood of information (plus trying to sort the wheat from the chaff) but basically for us it's easy: stay at home. That is also annoying, irritating, exasperating etc but the one thing it isn't is un-necessary. DD

    Have you got the despatches? No, I always walk like this. Eddie Braben
  • silverfoxxxx
    silverfoxxxx Member Posts: 131
    It’s all very odd, my friend and I have had no such letter and are both on Dmards, both currently in flare ups and know of people with the same or even lesser symptoms who have had letters, I wonder if it is being left up to each GP, which isn’t great as it sends a mixed message to everyone yet again.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520

    My GP has nothing to do with prescribing my meth or humira so I would be very surprised to hear from him/her. They do, however, give me my free flu jab so maybe they should have sent me a letter.

    Best practice must vary from area to area, flaring shows the meds are not fully controlling matters or that the body is going through a phase of showing who is boss. I flared at the beginning of the year with perfect bloods, rhyme, reason, logic and 'shoulds' have nothing to do with auto-immune arthritis which dunnarf complicate matters during complicated times. DD

    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Brynmor
    Brynmor Member Posts: 1,755

    Hi @Lily123 welcome to the Online Community.

    The information we have from the government can be found here: Guidance on shielding and protecting people defined on medical grounds as extremely vulnerable from COVID-19

    It may be that those who have received a letter did so based on medical advice. Some rheumatology patients also haven’t yet had a letter. If the NHS or your rheumatology team has told you that you’re ‘extremely vulnerable’, then you should follow that advice and shield yourself.

    The information to help assess your risk can be found here: COVID-19 - assessing your risk. This replaces the information linked to in the post above which is an internal NHS guide published back on the 16th March 2020.

    Our latest advice can be found here: Coronavirus (COVID-19) - what is it and where to go for information

    https://www.versusarthritis.org/news/2020/march/coronavirus-covid-19-what-is-it-and-where-to-go-for-information/

    Best wishes

    Brynmor

  • silverfoxxxx
    silverfoxxxx Member Posts: 131
    edited 1. Apr 2020, 06:17
    @dreamdaisy where as our rheumatology dept hands everything off to the GP after your visit, all follow up’s, blood test results and prescriptions are lead by the GP, mine hates it and says so every time I see him, and you only get contact from the rheumatology dept if requested by yourself via a phone service which is never manned and has been ‘down’ for about 4 out of the last 5 months due to staffing holidays and other reasons. I get seen once a year by my rheumatologist and generals have to tell him what my bloods are doing as they don’t look, last time he looked on screen as I mentioned they weren’t right and he instantly took me off Meth, just goes to show how poor some are compared to other regions of the country which doesn’t help in matters like this. I emailed them twice over a week ago with my concerns and still have not received anything back, a quick email reply would suffice saying self isolate, no need to self isolate or shield.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 1. Apr 2020, 10:24

    Mine is a teaching hospital and even though it should not make a difference in quality of care I suspect it does. I never see my rheumatologist now which doesn't bother me in the slightest but for the new kids on the rheumatology block they must feel abandoned.

    Still no letter, still no text, still behaving as though I have it. Had my bloods done at the GPs this morning. Appt at 8.05, got in at 9.15 because the surgery remained closed. Had to queue outside with more people than I have seen in four weeks. Wonder if I've caught it? 🤔 Got a free one-use mask though. DD

    Have you got the despatches? No, I always walk like this. Eddie Braben
  • silverfoxxxx
    silverfoxxxx Member Posts: 131
    @dreamdaisy make sure you save that mask for the height of the pandemic and don’t use to early, lol.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520

    Wise words there, silverfoxx, the next time I plan to leave the house will be July for another blood test so I might be able then to add to my mask collection!

    I remain thankful that this malarkey did not begin last October, yes I am stuck within the confines of the house and garden but at least going outside is a more pleasant as the days are longer and brighter. DD

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

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