Do we know if RA falls into that group, I don’t have diabetes, heart or lung problems. Is it me or is it still not clear the full list of conditions that fall into the vulnerable group?
Worrying times indeed Allanah ...hopefully mortgage companies will give payment breaks to those affected I know some have already..and benefits can be claimed if on on a enforced temporary stop from work or laid off 😢 to help with rent etc..not a lot but it will help.
Many key areas will need temporary staff to cope with the increase in work and if staff are off sick etc..be it paid or as a volunteer..but that doesn’t pay the bills!!
There is no single answer to this....we will all have different needs...One person may be give one answer & you will be given another.... If you continue to be worried you will have to contact your own clinicians ......can’t just go by what someone else has been told!
Hi. I was due to have a steroid injection yesterday but my rheumatologist said would be too dangerous as the higher dose would make me even more at risk. I'm currently on benapali which no longer appears to be helping but although he's happy for me to try a new drug he also wants to leave that until this crisis is over. I'm currently taking 5 mg of prednisolone and if the current flare up gets worse he's said can increase to 7.5mg but he stressed only if absolutely necessary. He's been my rheumatology doctor for 15 years and knows me well. I love my garden and he said to try to potter as much as I could to reduce stress levels during the next 3 months and to maintain fitness levels. It's a bit difficult with this horrible weather so at the moment I'm browsing all the garden mags and planning how lovely my garden will look with the extra work.
I read that Nicola sturgeon/ Scottish government will be contacting those with compromise immune systems ( some 200,000) with regards detailed advice? Not sure exactly whether we fall into this category but I’d have thought so?
The CMO at the press conference this afternoon quoted people with leukaemia , myeloma and those taking transplant rejection drugs as being in the very high risk group.
I don’t think that includes Dmards, or the strength of biologics we are given.
We must all contact our rheumatology nurses or our doctor to get their specific advice.
Yes, not in the Very high risk group but they did say there was a smaller group of other health conditions but didn’t elaborate or maybe I missed it? Conflicting advice some saying we are some not..good luck with trying to get hold of our Rheumatologists and specialist nurses at the moment. I carry an alert card with Rituximab..does this make me in the vulnerable group..why give me an alert card if not?! 🤷🏻♀️
I’m 70+ & on Rituximab...but have had no special instructions from my rheumy nurse.
I think we need to carry out all the protective hygiene measures,& unless we get a cough, a temperature ,or start to feel breathless, we should carry on as normal, and not worry.
As WB has said...you will soon know if you get the virus.
Yes more vulnerable than a person NOT on a Biologic, or JAK inhibitor...but nowhere near as vulnerable as people who are on anti rejection drugs after an organ transplant...or have leukaemia!
We really must get this in proportion ...& stop being alarmist.
Don’t you think If any of the drugs we are taking were thought to be particularly dangerous in this viral situation that NRAS would not have publicised it nationwide? Of course they would.
We need to be careful..follow the given advice & stop searching to find something to be scared about.
So much for the feint hope baricitinib, and 1 or 2 other meds, helping by lowering inflammation in the lungs. Not that I ever held out much hope as research is still in its early days.
Anyway, I phoned rheumy last week to ask if I should stop taking baricitinib, and as expected the answer was unless I was ill, no....not yet anyway!
Bojo said today that this is a new disease. I was hoping one of the journalists would ask about RA/RD and other associated diseases. There is no doubt there will be phone in lines somewhere asking medical questions. It's certainly not clear for us yet. I am just keeping clear away as much as possible but will have to go to hospital this week as been phoned to do so. Two of my GP's who do steroid injections are both of sick! Not sure if covid-19
Exactly I agree...I can keep myself safe etc, but my worry was and and still with my job, as I’m public facing . I’m on leave this week but hopefully there will be more guidance by the time I go back x
I think it's perfectly sensible to stay off work. You are in a vulnerable position that you actually don't know if you are at a higher risk or not. For that reason alone I would opt for safety measures. Stay at home.
They are spelling that out. They are urging people who CAN work from home to do so. This is primarily to stop an overload on the NHS. The less patients with virus the less pressure on the NHS. Some people who have the virus may not be aware they have it and even may not show or have many symptoms BUT they can transmit. That's enough reason to get the board games out, books, Netflix and wine ( if you drink) 😉
How do you feel about going into hospital? I have to go next week to have ankle checked and stayed after operation. I have to admit to feeling a bit apprehensive about going there - even just going outside if I’m honest!
I’m not being dramatic and I’ll obviously take every precaution but whilst I know I’ll
Be doing this, I have a hard time trusting that everyone else will be!
Well wasnt it an eye doctor in China who first reported it , got reprimanded and bless him he died?? It transmits through eyes mouth as well as coughing x
I have decided today I’m staying off work and isolating myself , I’m on mtx and biologics and work with 1200people from all over the world I think it might be a wise thing to do .
Hi Bucky, I agree with you. I just hope our union contact is with an update to say if we will be protected or not..health has to come first but I don’t want to lose my job either. X
I know I don’t know how I’m going to afford it but I got a 8yr old daughter in the house and I want to see her grow up , it sounds as if I’m thinking the worst but u never know .
I would of thought we r very much at risk . When watching the government on tv today they looked very worried , and it’s scared me , this is very serious and we all need to take care and use our heads , have a sit down with family and talk about it . But I would like to know how much at risk we really are as mtx and biological users .
I think it's important we take our meds tho as flaring makes you vulnerable and can affect joints lungs eyes kidneys etc in some cases.
Maybe the government and their advisers and NRAS will give us answers if we are classed in the vulnerable group that needs to stay home for 3 months at the weekend.
Yes no one knows.. get out Claus is no guidelines no precedence we are in limbo.when I started biologics they were very firm about stop taking if you are ill even a cold as you will be much worse as they effect your immunity
And if you are on rituximab you can’t stop you will just need to consult your rheumatology nurse to see if you should go forward with your next infusions.
I just heard on Sky..a lady saying she was on methotrexate and they were advising her to speak to her medical team..I couldn’t hear it all as I was upstairs. ..but it makes sense as they can’t comment on each individual case.
I suppose at the end of the day we all have virtually no immune system so our chances of getting it are more than most , but what would happen if we did get it ? Are we just more at risk of catching it and will we be seriously ill if we do get it ?
The NRAS post earlier on today said they had been advised by rheumatologists that traditional DMARDs including MTX carry low risk.
This is what they said
From the evidence so far, there is no increased risk of catching coronavirus for those taking conventional DMARDs such as methotrexate, leflunomide, sulphasalazine or hydroxychloroquine.
We have to have immunology blood tests before we have our next round as it can affect the immune system..I’m trying to find my alert card to see what it says..I last had it out when I contacted the hospital as they’d changed it to Truxima from Mabthera without telling me 🙄
But you are still at higher risk IF you catch it. NONE of our medications increase the chances of catching COVID. but if you do catch it, even mtx will affect your risk. All the information is clearly out there. Be safe.
If she was just speaking to a sky reporter ...that reporter probably would never have heard of Mtx.....so don’t get stressed when you don’t know the whole story,
I am certainly not stressed or panicking!! Will leave this here now..I’m trying to find out for work!! Have just found my alert card which has answered a few of my questions though. Just to repeat I’m worried of course I am like most of us..but I’m not stressed!
We are all at different stages of this disease we have ...if any of our doctors thought we were particularly at risk for contracting this virus they would get in touch with us.
Because we are taking a D mard and a Biologic it does not automatically mean that we are at any special risk.
So unless you got a dry cough ,feel breathless, or have a temperature please stop worrying yourself needlessly.
Correct me I’m wrong but my alert card states and I quote:
“This medicine may make you more likely to get infections”
TRUXIMA (RITUXIMAB)
But I will be checking with the professionals, but intend telling work tomorrow. I do not think anyone other than a professional is qualified to tell us we may not be at risk. We need to check with our Consultants or specialist nurses especially as advice has now changed again.
If you look back ...that is the advice that has been given.
I have being on Rituximab now for four years and believe me if I thought there was anything to worry about ....I would be banging on my doctor’s door tomorrow morning!
You are quite right ....only a qualified medical practitioner can tell you how vulnerable you are - but what you are told only applies to you...not to everybody....you may have other conditions that put you at special risk that others don’t have.
I promise I’m going to leave this here as it’s getting very frustrating..so a rampant , highly contagious virus with no vaccine and not much known at this stage about it ... regardless of whether you work in a frontline position or not..is not something to worry about? I beg to differ!! I will be checking with my consultant tomorrow.
No doubt you & XX million others.....but please try not to worry .....if you are being careful you probably stand no more chance of contracting this virus than any of us here.
You’re not medically trained though. Will probably have trouble getting hold of him but he doesn’t have millions or I hope not! His secretary is very good at getting messages to him too.
I’m on the highest dose possible of Rituximab. ( 1000 mg per liter)
Dosed every 4 months
For RA ( polyarthropathy and Lupus , but mainly for a very aggressive and refractory case of Antiphospholipid Syndrome.)
I live in Texas.
My Rheumatoligist said that Rituximab is very good because it does not erase the “memory” your body has of immunity. It’s not going to lease you terribly vulnerable to infections.
He did tell me, however, that I mustn’t let an illness go unchecked. In otherwords, I may need help more quickly overcoming an illness than if I were not on Rituximab.
He said, in the past if you came down with something you might say to yourself - I’m going to wait a few days and see if my body will fight this off. He said that’s where you can get into trouble with Rituximab. Get into your GP immediately.
That’s the difference. You may not catch things more easily on Rituximab, but you need help more quickly to overcome an illness.
I’ve done very well- and I’m also on steroids.
I’m taking extra precautions with social distancing right now- within reason- and hand washing diligently.
I was hand washing diligently before- I’d say I’m being more diligent about tech screens like cell phone and steering wheel of car now.
You are right to be concerned. You are doing the right thing. Go with your guts. Its hard to fathom why people persist in saying we are not vulnerable. We are. Each person's risk is different, but we are in the vulnerable category regardless. Rituxamib definately puts you at risk of a more severe course should you catch covid. Take care of yourself. Isolate if you can.
Thank you..I’m off work for 12 weeks at the moment and absolutely social distancing, only going out for exercise and essential supermarket/Pharmacy trips. Keep safe and well xx
Those on steroids, biologics or JAK inhibitors are at an increased risk of infection, any infection.
Ok, we won't all contract coronavirus, but if the general population are being advised to take care, then it make sense those at more risk, take more care.
Anyone having trouble paying the mortgage should contact their lender ...a lot of the main banks are giving a three months moratorium ...which will then be reviewed.
If you lose your job or just aren’t earning for awhile......Don’t wait until you are in arrears contact your lender as soon as you know you won’t be able to make your next payment.
There will have to be contingencies for people whose jobs are affected. Hopefully more information will come with the daily updates. It's unchartered waters.
It would be good to know about biologics. I had pneumonitis as a result of methotrexate and will need to find out if that makes a difference. 12 weeks in and what do I do about my cleaner coming in!
I am trying to find a list too. On mtx and Humira. Not sure my husband comes under the list too, ie heart. He had a myocardial infarction, which they said had caused damage and is on a shed load of drugs . He works and was due to go away for meetings tomorrow for 2 days but they are now doing the meeting over the internet.
Started today a sort of screening told everyone if they come into our house I would like them to wash their hands, have a childrens handwash for the grandchildren and they were as good as gold.
This is so confusing and worrying. It’s not clear if RA falls into the vulnerable category or if it is those with RA on certain meds or those with RA and other underlying conditions. And if any do fall within this vulnerable and 12 week category what does this really mean?? If I stay at home then what about others in my family- my husband who will continue to work and my kids at school etc (although I reckon schools will soon close)? Or are we all supposed to isolate for this period?
Boris said those in very high risk with some medical conditions like me (CKD) will be contacted with advice so its wait and see I suppose. So might they must have access to or compiled to a register of some sort with names of those at highest risk. Or are some hospitals getting instructions to contact vulnerable patients. So now its a home vacation and a long 3 months ahead.
Yes it's a self catering staycation not of our own choosing. It's not like these 'Winter birds' people who jump on a plane and spend Winter in Malta, Tenerife or warmer climes for the season. We are now turning into Spring Shielders! I'm unfortunately after Weds visit to the podietrist (clad with me rubber gloves, sanitizer and tissues) going to have to isolate. I can't cancel my feet as I'm in pain and they need treating, but don't know after that when I will see them again. Anyway, take care ML and let's all keep in touch and support each other. x
Exactly, so frustrating trying to get this across to people and no one on here is qualified to tell us we’re not or maybe not..we need to await any update on health condition from the government or our medical teams x
'My own bloody husband' haha this made me smile. My partner didn't think so too until today. After rheumy call this morning he is the one to freak out and told me to not go to work anymore.
Hopefully we all get some clearer information soon! It seems like it is all very confusing for medical staff and goverment too.
Others on social media are asking the same question..it’s vague for everyone, not just us. Hope we get clarification soon and if I hear from my union..will let you know . Best wishes x
I just don't see how people can work as normal under these circumstances.
Bojo has said people SHOULD work from home if they can. He wouldn't say that if there wasn't a risk to everyone. There will be no herd immunity so self isolating seems to be the way! He has said no pubs, restaurants, theatres! He is saying stay away from people! No employer will get away with sacking when the Government has said that no one will suffer by doing the right thing!
What some people are saying on here is utter nonsense! My gp surgery was only open to emergencies today. There is no way a doctor will see you about a work issue/sick note. You are entitled and justified to put your health first.
Absolutely and the very sick must come first.. I saw my GP last week for unrelated matter and she said she would ring me tomorrow to see how I am..I wouldn’t be surprised if I don’t get that call. We have to use our own judgement this is our life and health to consider..but would be good to have clarification that no employer could take disciplinary action if we’re off and if we will be paid or have to take it as sick or annual leave.
I honestly don't think you have to worry where that's concerned. Your employer wouldn't last a minute in law if anything like that was suggested in the current situation. You have a disease and you don't want another one! Go with your gut instinct. You know what your thinking is right xx
Been reading this thread and decided to stop here, exhausted reading it. I spoke to my RA consultant yesterday. My understanding it that a letter is coming out - certainly from my NHS trust and I assume from others sharing what they know. I think risk of contracting the virus is mainly dependent upon social contact, the consequences of having the virus is on a spectrum, as we know, from mild to severe. I have been told that I am more at risk of complications but and its a big but - that doesn't mean that I am at the severe end. We will have an idea from our medical history were we might lie on the spectrum. Do try and speak to a RA nurse of other RA specialist. I think some may be working remotely from home so will be available to speak over the phone as normal. It is a time when we are naturally anxious and frustrated. I do so hope you get the guidance and reassurance you seek. Please let me know. Kindest.
Many thanks and I am trying to do this. I must “stress” not panicking, not holding much out hope on hearing from my consultant etc. I work in a front facing role with vulnerable people.. I’m trying to find out where I stand with work....I can’t get this across Enough ..so frustrating !!!!!! Waiting for advice from my employer and union, not saying anymore on this now 😬 Keep well and stay safe!!!
Hi. Never thought you were panicking. I think you are being very sensible in seeking clarification. If in doubt step back until you gain the information you need. I would and I have worked in your sector before so I seriously understand your torn loyalties. Take care
Thank you Rosie... I stopped last night as I thought some thought I was panicking..not at all, just frustrated there’s no proper guidance.. Many thanks for your reply
No your not panicking there’s no guidelines. In Ireland my cousin is married to a gp. All RA patients there are in isolation. The elderly have no contact with the outside world people leave food on the door step
Thank you so much..I’m worried about my daughters in London, one of them travelling on the tube everyday too, but at least her employer (the Met) has an emergency planning meeting , hopefully will move her closer so she can drive rather than go by train and tube ..hopefully the rest of us will know something soon too. 🙏 Keep well and thanks xx
Sorry its upset you but I'm the opposite I'm SO glad this site exists and folks can use it in a way it helps, thanks NRAS admin and HU and all of you as it supports me xxx 🥰
You can’t make that decision,,,,you need it to be confirmed by your doctor.
Unless you have any of the symptoms described for this COVID-19...then you are advised to quarantine yourself and anybody else in your household...for 14 days.
But think about it ....the boss is going to want some more proof than you phoning up and saying you think you’re at risk isn’t he?
You can make any decision you have to if you feel like your health or even life is at risk you do whatever you have to stay safe and take care of yourself. It all depends on your boss too. It is confusing for everyone even gp's and goverment as it is a new virus. I received call from my rheumy this morning she just told me what she had to and didn't even let me ask many questions she sounded like she was in a hurry I am pretty sure there are hundreds more people she has to call and talk to.
I spoke to my manager explained my situation and told him that my doctor didn't give me specific guidance related to work he said he is happy for me not to come to work if I have to. It surprised me how easy it was. If you can work from home and job would still get done what difference would it make for your boss?
I agree with you..we can make this decision and hopefully would
Be covered by the Equality Act. Easy for people who don’t have to work to say we can’t make this decision ..these are unheard of situations, we’ve never had to deal with anything like this before , neither have had our employers, government, GP’s, hospitals ..NOONE, advice is literally likely to change daily at the moment. I’m really pleased that you got clarification from your Employer..hopefully others will follow suit! Keep well x
I was meaning you can’t just decide yourself that you think you’re “vulnerable”.....so you won ,t go to work ......without any consultation ....but still expect to be paid.
In most companies it doesn’t work like that.
Of course a lot of jobs can be done from home...but in a controlled way...you phoned your boss & he agreed....all sorted,
But what I was meaning is you can only just not go in to work if you have the three main symptoms of Covid19...cough, temperature & breathlessness.
Then you are advised to isolate yourself & anyone who lives in the same House for 14 days....not to be done lightly.....because companies are going to need to be compensated if a lot if their staff do this,
It is a minefield,& people have to do what you did...consult their boss about working from home in a managed manner.
Not sure about other companies but the one I work at has to ask a list of specific questions if someone calls in and says that they think they have covid as there will be people who will try to use the situation and lie about it to stay off work and still get paid...
I am not gonna get paid for the time I will be off work but I am glad my manager is supportive and agreed for me not to go in for the time being.
You did exactly the right thing in a controlled & professional manner.....I’m sure your boss appreciates that.,
Now spend your time avoiding this nasty virus.
I am going to spend my time perfecting the look I give to any cheeky official who challenges me whenI pop to the shops when/if the 70+ Seniors are under house arrest!
“How dare you young man...I am only 69!“
Has anyone any idea what the penalty is when I’m caught?
Morigan I don't know where you work but anyone working in an environment beside a lot of people shouldn't be there. Bojo has told the public not to go to pubs, clubs, theatres and so on . Why? Because the risk of catching covid-19 is high. So what's the difference at work? No one and I mean no one knows what staff members have being doing socially so how does anyone know that they are not sitting beside a carrier? They don't know!
I had decided today that I am limiting social contact now due to there being one identified case in my area. Now trying to find a friend to use my cinema ticket on Thursday.
I will go out to buy items in Boots tomorrow but then stay away from all my usual groups etc. till the progress of this crisis becomes clearer or I get COVID-19 anyway.
I think I will order a Pilates DVD so I can start an exercise programme at home. I've got the kit here from when I used to go to classes pre RD.
But I will have to organise my space though so I have a means of pulling myself up from the floor after mat work!! Is there a Pilates DVD for the elderly/disabled, does anyone know? No chance of Lotus ... 🧘♀️
My wonderful pilates teacher has emailed us all to say she is doing daily sessions on facebook for us to join... we are a class of wonky people so it is very gentle and suitable. Only issue of course that it’s in French! But you could practice your french at same time of course.
She’s not a professional vlogger by any means! But thought having to fend off her dog was sweet. Lovely women who specialises in people with physical problems.
I had an appointment with my gp today, over the phone for a pill review, I'm on mtx and hydroxy, I asked if I was vulnerable, he said yes, and to contact 111 and the surgery if I was to get the virus and felt out of breath and can't cope, But nothing about 12 weeks isolation.
Thanks allanah, listened on radio 4 earlier & thought Bojo et al said anyone with chronic condition & under 65 who had to get flu jab included in social distancing. x
For what it's worth, just heard on BBC radio 5 public phone in, a mother of a 14 year old asked the guest doctor if her child was at more risk because he/she was taking immune suppressants for Chrones disease. The doctor's reply was that as yet there was no solid advice available (surprise surprise) but she should seriously consider letting her child go to school even though children seem to get only mild symptoms.
Spoke to rhuemy nurse yesterday and he said if on dmards we have low immunity as meds lower it. Also if you become poorly with covid 19 or any infection stop meds.
Thanks legly. I called rheumy helpline as I'm due my TCZ drip on Monday and ha e to get bloods done tomorrow at gp. Gp said sit outside and they will call me when it's time to get my bloods done !! And I'll let you know what my rheumy says this afternoon !
I’ve just spoken to my GP who suggested I am high risk and shouldn’t go to work for 12 weeks. I don’t know what to do. I’m a nanny and my bosses need me. I’m devastated
What is yr condition and what meds do u take ? . It’s a difficult decision for u . I know what I would do but people wouldn’t like my answer . It’s so difficult I watch the tv and I’m open mouthed it’s like a movie . I can go to work but just keep away from people but that’s difficult as 1200 people work there and they r from all over the world . How can I stay at home for 12 weeks and lose 12 weeks of wages I can’t . It’s a nightmare . It’s easy to say stay at home but as I’m on min wage and struggle from week to week I just can’t afford if . I hope u work it out I really do .
I'm retired on I'll health so dont have that problem. I have RA, get radiotherapy, just finished a session last week, have asthma, have heart condition, in remission from diabetes type 2. On TCZ Infusion monthly, two arava daily, 15 mg steroid daily , blood thinners ... so I'm social distancing, not locked in yet, but I can so it makes sense
I have seropositive RA and take methotrexate and sulfasalazine. It’s fairly well managed. My gut reaction is to socially isolate but still go to work. I only work 12 hours over 3 days. I’m trying to speak to the rheumy nurses but not getting very far
That’s what I’m going to do , I’m just going to try and keep away from people , I’m not getting any real confirmation what to do . If they came forward and said that we are high risk then I’d have to change my mind . It’s really difficult for us all and when I say all I mean the government and all the people
Im in Ireland at the moment and from the get go all autoimmune suppressed treated illness and (RA was named specifically) are seen as been at risk.
I think the slowness of Boris and his attention to the economy and talking about herding convinced me to stay here for the time being. He's an idiot and his advisors putting forward this approach was outrageous. Now that they are being more sensible I will gauge when to return. I am going out for walks and getting the sea air and my vitamin D. Keep well everyone
Just read your biography/ introduction to your self.
While you isolate and cozy up with your family, I suggest ( if you’d like) planning your next fun trip combining your love of travel and music festivals!
Might I suggest you have a look at South by Southwest music and film festival in Austin Texas?
It’s abbreviated SXSW.
Its America’s biggest music festival each year, and happens in March. ( of course it got cancelled this year - thank you very much COVID19!)
Jimmy Fallon went last year and put on a couple of fun videos about it on his show when he returned to NYC. You could go a google search.
Something new and fun to have a look into if you don’t already know about it😊.
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