Corona Virus/covid 19

124

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520

    It's reached my neighbourhood. Staying indoors is a very good plan indeed. DD

    Have you got the despatches? No, I always walk like this. Eddie Braben
  • louisealice
    louisealice Member Posts: 25

    hi,

    like some others in the chain, I am new to the forum - specifically looking for some practical guidance and understanding of the governments advice as it impacts on arthritis sufferers.

    Want to thank everyone for all their comments but especially

    Mike1 on Mar19th - with the link on the difference between social distancing and isolation

    and

    Sandp27 on Mar 19th with the link to the advice to Rheumatology services - Table 2 with the list of immuno suppressive medicines is brilliant - the first time I have seen my biologic Sarilumab mentioned.

    It's clear and definitive.

    again thanks to all

    Louise

  • Sandp27
    Sandp27 Member Posts: 7

    No worries Louise.

    Found this as well on the NRAS website. Interesting comment about conventional DMARDs. This chimes a little with the advice from my Rhem Nurse. Though she was wrong about not being in the vulnerable group.

    - Is it the RA or the immune-suppressing medications that heighten my risk?

    This is a difficult question to answer because there is such a spectrum of expression of RA. But broadly speaking, RA does increase vulnerability and particularly if it is active. Treatments such as methotrexate and other conventional synthetic DMARDs are generally not immunosuppressing when used at the right dose to control someone with RA. We know that steroids, biologics, biosimilars and JAK inhibitors may cause immunosuppression even though they help control the disease.

  • Maturecheese
    Maturecheese Member Posts: 130
    edited 22. Mar 2020, 17:02

    I gotta laugh, I went to our local country park which is huge for a walk to get exercise and surprise surprise they closed it today. Now I understand they are trying to protect their staff but surely we are fairly safe outside as long as we are sensible? Considering the situation in the shops I would have thought this was far healthier. Anyway I'm pretty much doomed as the wife works for the local Council and now that they cannot do their jobs in the community she has to stay in the the offices of the council building with 600 odd others so if I'm going to catch it, it will be from her. What's frustrating is she could be working from home as they have laptops for that but her boss is young and a bit indecisive so won't let his staff do this even though her previous boss used to allow it and loads of others in the building are. So it's pretty inevitable that I'm going to catch it but I'm fairly fit so I just hope that stopping the meds works. Stay safe all

  • silverfoxxxx
    silverfoxxxx Member Posts: 131
    With the new announcement does that include many of us, immunosuppressed, or is it drugs over a certain strength, I’m currently on Leflunomide going onto Imraldi on Tuesday.
  • Nikki8
    Nikki8 Member Posts: 1
    Hi, 46 with RA here, currently not taking my hydroxychloroquine or meloxicam due to a nasty chest infection, I stopped taking them two weeks ago and I'm currently on a course of doxycycline. Confused as to whether I should be self isolating for 12 weeks? Also currently having a flare and feeling very sorry for myself. Can't get hold of anyone at the consultants office that knows anything. Shlukd I resume my meds straight away? Wait until my infection goes and I've finished my antibiotics? The info out there is so unclear, I'm sure I'm not at high risk normally but feel very much at risk right now. Thank you in advance for any much appreciated advice :(
  • Brynmor
    Brynmor Member Posts: 1,755

    Hi @Nikki8 and welcome to the Versus Arthritis online Community.

    I'm sorry to hear you have a nasty chest infection and have had to give up your course of hydroxychloroquine at such a worrying time. Its not surprising that this has given rise to a flare 🙁

    The 12 weeks isolation is for those who are extremely vulnerable from COVID-19 and the NHS will be contacting those affected directly to provide further advice.

    Public Health England has a full page which describes those who are classed as extremely vulnerable:


    https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19


    Our website also has additional material that provides information and links regarding the covid-19 virus for support of those who are also at risk:


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


    Our information will be updated again tomorrow in the light of the events and announcements over the weekend.

    Do stay and keep in touch and let us know how you get on.

    All best wishes

    Brynmor

  • Sandp27
    Sandp27 Member Posts: 7

    More very useful guidance here for whether a Rheumatology patient is to be classified as high, moderate or low risk. A high risk patient is advised to go into the 12 week isolation period and will receive a letter from the NHS.

    https://www.rheumatology.org.uk/Portals/0/Documents/Rheumatology_advice_coronavirus_immunosuppressed_patients_220320.pdf?ver=2020-03-22-155745-717

  • silverfoxxxx
    silverfoxxxx Member Posts: 131
    edited 23. Mar 2020, 19:40
    Hi,
    Looking through the pdf from Sandp27 above it says ‘under control’ Is moderate risk, but there seems to be no advice for people who aren’t under control, my inflammatory arthritis hasn’t been under control for over 2 years now so we’re would I sit, and I also worry that the Rheumatologist wouldn’t take this into account as you can never get hold of them to pass on information, they assume they’ve given you a drug and your ok but that isn’t always the case, it’s a minefield currently and no one seems to be any help, I tried again today to contact a specialist nurse and again no nurses to answer messages, that’s 9 or 10 weeks now that I haven’t been able to update anyone about my situation.

    This is also a good list of arthritis types and medication and where they sit.

    https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2020/03/clinical-guide-rheumatology-patients-v1-19-march-2020.pdf
  • silverfoxxxx
    silverfoxxxx Member Posts: 131
    Also just found this, not sure why all these PDF’s are available just through a google search, this is information for Rheumatology patients.

    https://www.dchft.nhs.uk/patients/departments-P-Z/rheumatology/Documents/Coronavirus%20Information%20for%20Rheumatology%20Patients.pdf
  • zingiber
    zingiber Member Posts: 2

    Further to the pdf from Sandp27 (many thanks!), the following supplementary score chart has now been added. I think I'm being thick here as it seems to score differently than the original PDF, ie I am on methotrexate and hydroxychloroquine, so in the pdf I am in 'moderate' category, but the score chart seems to place me in just 'social distance' category, but is that not the same as everyone else in the country? Have I missed something? Are they talking about social distancing in a different way? https://www.rheumatology.org.uk/Portals/0/Documents/COVID19_risk_scoring_guide.pdf?ver=2020-03-23-165634-597

  • silverfoxxxx
    silverfoxxxx Member Posts: 131
    looking at the chart, where would I sit with having both my knees steroid injected less than 4 weeks ago? and on Leflunomide, and why aren’t we being contacted with this information?
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 24. Mar 2020, 19:47

    It is shameful that, at this time of national and global crisis, many people are not receiving individually tailored guidance from the Government and other official sources and are thus being forced to try to work out for themselves what groups into which they might or not fall. Trying to work out what one should or should not be doing is similarly tricky, judging by the pictures in the media after the first sunny weekend of the year our society is struggling with the concept of behaving responsibly for the sake of others.

    Yes, us auto-immuners take nasty meds but at considerably lower doses than those with various cancers (eg. 15ml sub-cut injection versus 1000ml straight into the spine). It is fact that we are immuno-suppressed but not hugely so, it is fact that we qualify for a free flu jab, therefore it is also fact that we need to be more careful than the healthy hoi-polloi. We, however, have only arthritis, a non-killer of a disease unlike those who have cancer, CF, diabetes and the like.

    I am not enamoured of the idea of being confined to barracks for a minimum of twelve weeks but understand the reasoning behind it. I remain even less enamoured of the alternative which could well result in my death, I would give odds of 70/30 that in my case covid would win. Having said that I have been playing the immuno-suppressed game for over twenty years so am used to the strictures it places upon my social life (and placed upon my working life). For those who have to go to work because they are either key workers or work in supermarkets etc they are at greater risk which is why everyone else has to be far more conscientious about social distancing and not behaving like prats. The NHS needs to be as uncluttered as possible because of what is coming.

    Judging by the messages flying round on my local social media, for many of my neighbours it's all a bit of a hoot; no school, no commuting, working from the back bedroom, getting the whole family to walk a mile in the back garden at 5pm, wot larks, Pip. One neighbour is incensed that our garden waste collections have been stopped by the Council, apparently this is not on as she pays her CT. You have to wonder. DD

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

    Just updating this thread with a link to the latest information published earlier today on our website:

    Additional Information for rheumatology patients about COVID-19

    https://www.versusarthritis.org/information-for-rheumatology-patients-about-covid-19/


  • lucybadger
    lucybadger Member Posts: 6
    edited 25. Mar 2020, 11:57

    Thats useful information thanks Brynmor. However, can I check, does this mean if I only take one TYPE of immune suppression tablet and/or injection I am low risk? The chart seems to be the same as one posted above but missed this section on the bottom:

    "**** Co-morbidity includes: age >70, Diabetes Mellitus, any pre-existing lung disease, renal impairment, any history of Ischaemic Heart Disease or hypertension. Patients who have rheumatoid arthritis (RA) or CTD-related interstititial lung disease (ILD) are at additional risk and may need to be placed in the shielding category. All patients with pulmonary hypertension are placed in the shielding category."

    Which suggests that RA patients are all at higher risk? I'm confused!

  • silverfoxxxx
    silverfoxxxx Member Posts: 131
    @Lucybadger, I have this same problem, the information isn’t clear and rheumatology don’t seem to want to answer any of my questions.
  • Brynmor
    Brynmor Member Posts: 1,755

    @lucybadger : "However, can I check, does this mean if I only take one TYPE of immune suppression tablet and/or injection I am low risk?"

    The chart scores 2 points if you take more than one type of immune suppression:

    Are you on two or more immune suppression tablets and/or injections (other than sulfasalazine or hydroxychloroquine)? = 2 points


    The extract from the other chart is confusing:

    "**** Co-morbidity includes: age >70, Diabetes Mellitus, any pre-existing lung disease, renal impairment, any history of Ischaemic Heart Disease or hypertension. etc... "

    This note is referring to the other chart section as follows:

    Any one or more of these: age >70, Diabetes Mellitus, pre-existing lung disease, renal impairment, history of ischaemic heart disease or hypertension = 1 point.


    This corresponds to the same section on our chart:

    Do you have any of the following problems: diabetes, lung problems, heart disease, high blood pressure?

    Or even if you do not have any of these problems, are you over 70 years old? = 1 point


    This does not cover all those people with RA. You will need to add up the scores to ascertain which level of risk you are.

    Hope this helps make things a little clearer: the two charts are essentially the same - ours was compiled in conjunction with British Society for Rheumatology and NHS England and published subsequently to the first one from BSR.

    Brynmor

  • lucybadger
    lucybadger Member Posts: 6

    @Brynmor Thanks so much for the clarification. It seems I am not as high a risk as originally thought as I just take Methotrexate and (currently, touch wood) have no other health issues.

  • Brynmor
    Brynmor Member Posts: 1,755

    Latest additional information has now been published on our website:

    Rheumatology patients and COVID-19 - learn more about the risk levels

    COVID-19 advice for people taking steroids

    Brynmor

  • Mike1
    Mike1 Member Posts: 1,992

    I am absolutely fuming - in Cornwall we have one main hospital called Treliske, a nurse I know told me today that there are currently 27 coronovirus patients in there 19 OF WHICH COME FROM OUT OF THE COUNTY. The PM told all people to remain in their primary residences the other day but these 19 are selfish second home owners who have decided to do whatever they want. Not only have they pushed up house prices down here beyond locals' reach but now they are bringing their bugs down and infecting the local population and taking away our NHS resources.

  • louisealice
    louisealice Member Posts: 25

    Brynmor

    many thanks for the link into the scoring table - very helpful and clear

    Louise

  • Airwave!
    Airwave! Member Posts: 2,471

    I read on the BBC Qand A that there are anecdotal question marks over the loss of taste and smell associated with the virus, nothing proven or confirmed.

    Back to my book and thinking of what to do next.

    its a grin, honest!

  • dreamdaisy
    dreamdaisy Member Posts: 31,520

    We have the same in Suffolk, Mike. Lots of second home owners cluttering Southwold and Aldeburgh, many complaining that there are not enough supplies; a long break at the seaside seemed like a plan until the pubs and restaurants were shut. 😂 Burger off back to London, twerps. There are more doctors, better and bigger hospitals, all of which might bcome necessary. DD

    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Michelleho
    Michelleho Member Posts: 7
    Confused by the scoring table. I’ve recently been diagnosed with rheumatoid and only been on the methotrexate tablets for a month. I don’t have any other health issues and received a letter this morning saying I need to stay in for 12 weeks and keep away from my family in the house. I really didn’t think I would be that at risk not sure how we will manage this with 4 of us in the house
  • YvonneH
    YvonneH Member Posts: 1,075

    Hi Michelleho,

    It's great to meet you I'm glad you have a diagnosis and have started medication for rheumatoid arthritis, I hope you weren't waiting too long for treatment to begin.

    Here's our leaflet regarding RA

    https://www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/

    Usually for those only taking methotrexate the risk is confined to social distancing, so perhaps it is because you are new to taking the medication. It could set your mind at rest to ring your rheumatology department or rheumy nurse if you have been given one just to clarify.

    Unfortunately if that is the case then either all the family would need to isolate themselves or you would need to spend the time separated from them, but if that is the way to be sure you are safe at the end of this virus then that is the way it will need to be.

    Please let us know as soon as you have clarified this as it may well be relevant to others in your situation, in the mean time see if you can offer any help with hints and tips on managing at this time or visit our chit chat category for some lively conversations

    Take care

    Yvonne

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