I think most of us already have to do this and I'm not sure the new Health minister understands and I've just read on a goverment email immunosuppressed only have 74% protection, which is better than none (gov.uk/government/news/covi...
In a House of Commons debate following the Government’s proposal to remove the legal requirement for wearing face masks from 19 July, Sajid Javid was asked about the impact the measure would have on people who are immunosuppressed.
The health secretary said those patients would be protected by either getting the vaccine themselves or by others around them being jabbed, while saying they should also protect themselves against colds and other viruses
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Chrissycl
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I had the Phizer and kidney people are saying its 89% so who knows ? I'll get the booster, and keep wearing the mask and just do my best to stay safe. Life is going to be a new normal isn't it ? Sad though having to think before to not hug a best friend or relative not seen for ages. xx
I don't think any of us should take it for granted that the jabs will have worked. It is better to be safe than sorry, but each of us must make out own reasoned decisions. I'm still being very cautious and, apart from numerous visits to hospital and the surgery for blood tests etc, have only been going out to church (for the last six weeks). Our congregation is very small, seven of us plus the priest yesterday, all wearing masks and spread well out so my husband and I feel safe. When masks come off we will probably watch an online service instead. We will miss seeing our church 'family' in person but they fully understand how things are. My husband is scheduled for another knee replacement at the end of the month (if covid hospitalisations don't compromise it) so that will be an added incentive to be careful. Take care, Neonkittie, stay safe. xx🙂
Thank you and you too. 🙏🏻💗Fully understand you Knip. I think the immuno-compromised should always be cautious re infections and no-one should be pressurised to do anything they feel is wrong for them. I hope your husband can go ahead with his knee op and that all goes well. xx
Think Rtx, JAKs and long term use of oral steroids will be the main concern for RA patients and we will be told to be very careful but no real instruction to stay in as such. I’ll just do what I’ve been doing and take notice of my consultants. Maybe they will tell us officially as such that we will be prioritised for the booster vaccine in September/October as had been talked about already from the former HS.
I don’t like the “appetite for risk” quote .... at the end which was made. Not helpful. 😑
The first general advice I’ve seen on Gov.UK isn’t so informative tbh. Doesn’t mention conditions/meds and only the AZ vaccine. Hopefully they’ve got more advice for CEV/vulnerable/immunosuppressed.
I’ve worked out my own situation a long time ago on Rtx and spoken to my rheumy recently who agrees with my decisions re my own situation. Basically continue shielding in the way you have been for now and the near future.
I am not ever one to follow anything that sounds risky or not right for my health because the Government said it’s OK. x
Yes be your own health and safety person its the only way forward, and I can't believe that the seemingly nice Matt Hancock is such a swine but then again isn't that the same for all politician's one rule for us and another for them.
I agree about us being our own health and safety person. However, I have concerns about immune suppressed and immune compromised people who are going to work in risky environments without supportive employers. Shielding affords them a better level of protection. The rest us can decide if we wish to shield or not but without anything official, some people will have no option but to work and put their health at risk.
But employers are obliged to provide Covid safe working conditions. I do agree though as obliged and actually doing it are not the same thing. However how do you legislate for an individual circumstance ? and who is going to pay the salaries of those shielding for ever ? as Covid is here to stay so we must live with it. I think its dreadfully difficult and should not be done all at once but if someone is so at risk now that they feel unable to go to work that they then should be able to look to a different scheme for supporting them not the blanket furlough which is unsustainable in the long term. I'd like to see a new form of Covid support scheme for those at highest risk determined by a medical professional and not recoverable as a special circumstance. A new benefit targeted in this case if that makes sense. xx
In my ideal world which I’m aware is a fantasy (!) people who are clinically extremely vulnerable and immune compromised/suppressed and work in a high risk environment (hospital based nursing or teaching, for example) should be offered long term redeployment or some kind of furlough. Apparently there are ‘only’ 0.5 million people who are clinically extremely vulnerable and at risk due to poor vaccine response, therefore it can’t be a huge number of people who’ll need practical and financial support. For example, many people in that group will be retired or in a job where they can easily work from home. I am in a high risk job and immune suppressed, I am doing a desk based version of my role but I recognise my good luck and privilege in having an amazing employer. I worry for those who don’t.
Yes thats what I think but I read it was even more 'only' at .7 million against the whole population of 66 million. It's the long term view thats being missed isn't it? Covid is here to stay and a lot aren't so lucky. Also police, fireman, prison officers, social services, local government, transport workers, and even hospitality staff some will be at higher risk and can't work from home and will never be able too nor get a Covid secure environment no matter how good the employer. Around here its rural and Covid is low and perhaps its a case that relax here but not where its still in high numbers. You must do your best to stay safe. xx
So far and to date, my employer ( big city council) have been good.
However, there is a certain amount of noise about getting us back into the office and there is definitely a pressure to be out and about more - not just child protection -
It’s a worry. Especially, as you said, things can’t go in as now, forever but I worry as I see an opening for management ( in general) going down the route of not being medically fit for post etc
I don’t think there will be any special schemes ML…..Shielding forever can’t be an option…..the Gov is now intent on improving the economy to get people working to get taxes flowing in….the forecast is grim about how long recovery is going to take.I think those who might be considered for some sort of new Benefit are those with Long Covid….those who may never be able to work again. Let’s hope the scientists can find something to help these people
And sadly it does seem to affect younger people more seriously.I wonder how long it will take all the disbelievers to recognise that everybody needs to take care?
I listened to Andrew Marr this morning (not a big fan) interview Javid. Javid stuttered and stammered his way through the interview, avoiding difficult questions with rhetoric. It certainly does not inspire confidence.
They are not scientists, nor are they health communicators…they should leave the Covid PR to the likes of Van Tam…& get on …..together with RS …sorting the economy….people have warmed to VT & his Mum….& he explains what needs to be done in layman’s terms.If NHS funds aren’t directed in an organised way….not just throwing money willy nilly……we shall be having the same discussions forever.
I am in the research group for ONS and am now also having my blood tested for anti-bodies. My first result showed that I have anti-bodies. That is a bonus as far as I am concerned. With RA (classed as severe) and on Tocilizumab, I was unsure.
The government are doing exactly what could be foreseen, when the scientist they often ignore, provided a vaccine. Get the majority vaccinated and let the people take responsibility for their own health. The current government can return its focus on their pockets, money rules the world. People are a resource. Simple economic truth.
I didn't have side effects either (my arm hurt a little bit after the first dose but much less after the second one). It doesn't mean that the vaccine hasn't worked if you didn't have any side effects (just means we were lucky 🙃).
I’m afraid as a retired nurse I have absolutely no faith in these so called “Health Ministers” not one of them have any training in medicine. Javid’s forte is money! I personally think it’s completely wrong as someone in this position should at least have a prior inkling into how the health service works. It’s not political as that goes for any party. It’s utter nonsense. I will continue to be cautious.
Sadly it doesn’t follow that a scientific/medical qualification helps….we have had Drs as SSH..& their political ambitions seem to overcome their clinical knowledge!
My main thought is my GP doesn’t treat me so does the health secretary not even grasp the basic understanding that many immune suppressed people are under the care of a consultant and they understand our treatment and the impact on our immunity better than anyone else
But my other thought is I am fairly new to RA - diagnosed 3 weeks before pandemic hit and I remember being counselled by nurse before starting treatment that I would have to take more care against all types of infections including viral and bacterial because of treatment - which seemed a little scary at the time but became terrifying due to Covid
I am coming to the conclusion that there are no clear answers for us - we are all on different treatments etc . I am on dual therapy so would definitely settle for 74% protection
Let’s continue to do what we do best support each other, share information feeling and thoughts and take our own individual decisions to stay safe and well
Yes, there needs to be more than a generalisation, but they will hopefully add something to their Gov.uk website and also the Chief Exec of the U.K. blood cancer charity has asked the government to write to all immunocompromised people to clarify there is still risk for such people. Boris and Javid don’t grasp it .. and they never will. (Boris also seems to forget he was very ill with the virus.) Only if/when the NHS are overwhelmed again will he be forced to do something. 😢
The Government advice is way too general, grouping all immunosuppressed people together. We need to see the data broken down. For example what is the vaccine efficacy in people how take immunosuppressed medications (like us)? I guess we wait for more and larger studies on this. I’m taking another antibody test - no antibodies after first dose. Hopefully there’ll be a few floating about now (second dose at end of May).
They need to give more specific info. What was on the website was nothing new.
Your antibodies could have been and gone. It’s difficult to say I was told, but my med was my reason for no antibodies and I suspected anyhow as even though I waited 6 months after my Rtx infusion I don’t always repopulate B cells as soon as that. I’m to repeat the vaccines as soon as my B cells are at an appropriate level. I was told 6 weeks after your second vaccine is the best time to do the antibodies test by the testing company.
Being immunosuppressed & fully vaccinated, I will also continue to shield as much as I can. Shielding is much more difficult with people not wearing masks or self distancing. People where I live have already stop taking any protection & act as if it is all over. Some supermarkets deliveries drivers have stopped wearing masks & self distancing which is very worrying. I will be asking them to distance & wear a mask when having my delivery. All will be very difficult with the government’s current behaviour & not clearly informing the general public of how careful we all need to be. There will be no freedom for us immunosuppressed trying to manage the risk to our lives & wellbeing.
But there already is more freedom, some shielding people are back at work, not everyone can take as much time off as they like. Shielding had to end sometime, we can’t stay at home forever. I wear full PPE and am careful, there’s not much more I can do.
I don’t think there are any of us who would choice to shield. Some of us have multiple co morbidities as well being on immunosuppressant medications & not all are of us are elderly. Hearing the government announcement today with a statement that there could be a possible 100 to 200 deaths a day later this summer. I will shield again as I want to work & see my family & friends in the future
Well I’m not old either and shielded to start with but I have to work and can’t do it from home, you’re very lucky you can decide not to. We all have to take care of ourselves whatever situation we end up in.
Yes .. the maskless postman walked right up to us when we were in the garden and wanted my husband to take a parcel last week. My OH stopped him and said nicely ... you can put it on that wall thanks.
Chrissie, he is a politician. We all know that everyone must be vaccinated - and some will be more vulnerable after vaccination than others. I hear Boris is going to soften his advice about mask wearing, but we must use our common sense.
The yearly flu vaccine is not 100% effective - and some people having had that vaccine and get a bit of a sniffle say it hasn't worked; that is nonsense. Anybody who has had a full-blown attack of flu knows that it is much more than a sniffle, and can certainly cause death. Asian flu when I was young was devastating - I was delirious and very ill.
I'd go for 74% as others have mentioned. And I shan't rely on advice from politicians.
I remember the Asian flu epidemic although I was very young. The whole family got it and we were all quite poorly. I was too young to know what was going on but I understand that in those days no measures were taken other than giving general advice and life went on as normal. Tens of thousands died though it was nothing like Covid. A vaccine was produced fairly quickly and they reached herd immunity of 60% by vaccination and infection of the population. They kept vaccinating that particular strain for a couple of years like a normal flu vaccine and eventually it died out but of course there’s always a flu strain around. In those days there weren’t the immune suppressants for RA. People just took aspirin. I’m certainly happy with 74%.
I was about 20 or 21 at the time I caught it. There was no treatment that I remember - I just literally sweated it out in bed. The doctor came to the house - I don't even recall that - but my mother was told to change my nightdress! I "lost" a few days and was unaware of what was happening to me.
I don't remember anyone talking about it either. Once better, I got up, went back to work without giving it another thought.
We are so much better informed about things these days.
For me, I struggle with any flu like comparisons- I don’t really get it. Covid is a very different beast and unlike the flu, can affect all organs etc and the damage can last for years - potentially forever.
I do understand that the flu can be fatal, but to keep, it is a very different virus- unless I’m missing something, and that’s entirely possible!
Yes you’re right, It is different from ordinary flu which most people get over fairly quickly. Some people have symptoms which last months and the very unlucky few have permanent problems. It’s a bit scary.
It was more the advice he was giving about stay away from people with colds and flu and other infections, it just goes to show that he has no clue to how immunosuppressed patients live their lives in constant awareness of infections of any kind.
Do the medications you’re on make you immunosuppressed, or is it the RA and/or the combination?
I’m amazed at how the UK has taken things much more seriously than the US. It sounds like your mask mandates are ending. But you guys were fortunate to have had it so long along with your lockdowns, which I know doesn’t bring comfort to you. My state ended lockdown last May (2020) and our mask mandate ended in March. Yet even with it too many didn’t take it seriously.
My medications - methotrexate and infliximab - do suppress the immune system (especially the infliximab which is a biologic) and that's why the recent announcement here by Boris Johnson that he will be changing a lot of the rules about social distancing and mask wearing is causing consternation.
I heard on the BBC news at lunchtime that he has slightly modified that announcement but, unfortunately, all this "stop/start" is not helpful and many people who can't wait to get back to normal will just ignore any advice to act sensibly.
It hasn't been easy to persuade some people to get vaccinated - for all sorts of reasons. Their "human rights" is one! Others feel their freedom is being attacked. Others quote religious reasons.
As far as I'm concerned, I shall continue to avoid indoor areas - shops particularly (we have everything delivered) but also pubs, cafes and restaurants unless they provide outside tables. Apart from being immunosuppressed, I'm also old - just about to celebrate my 86th birthday - so I do feel vulnerable.
The US is such a huge country yet you have done amazingly well with your vaccine roll out.
Do take care - and don't be put off wearing a mask just because it is no longer compulsory. But it works better if everyone wears a mask.
Happy upcoming 86th birthday!!! Thanks for the detailed response. It is helpful and appreciated. Even when my state ended lockdown and masks, I still had them and stayed away from people. I was fortunate to work from home, and living rural, most of my neighbors are like me stay home or in nature. Take care of yourself as well!
Thank you for your good wishes. I think you have the right formula - living in a rural area and working from home!
I worry about my daughter who lives in London. Cornwall was the choice for the recent G7 meeting because it is relatively remote. The Cornish were worried, but it was good for the economy!
Enjoy the rest of the summer - I hope you aren't in one of the "hot spots".
I'm 59 years old lady, CEV, Whose been in lockdown, for almost a 18 months now. I have a number of health issues, including Rheumatoid & Osty arthritis. I have also have mobility problems. I'm housebound + Self inject Methotrexate, an immune suppressant weekly. I have not been vaccinated yet. The Doctor came to my home to give me my Covid Jab & after asking me a few initial questions. She refused to do my injection, due to my own personal health issues. I was referred back to my GP & My GP referred me to be allergy tested by Plymouth University Hospital. They have booked me in for a telephone convo on the 27th of August. I'm truly panicking, what, if they they I can't be vaccinated. My area is rife with Covid Victims, In fact I've just lost a good friend last week, due to catching Covid. It killed him in 3 days. He was sent home last Monday to self isolate . He died alone at home on Wednesday 14 of July., & was found 4 days later by the police ... What a crying shame, he was so poorly, had no one to call for help, when he needed it. cos he lived alone. Sadly he was just sent home to die quietly I've since heard more of my friends have tested positive & are self isolating ...How darn frightening ... trying hard not pre-empt, who will be next Sadly in the blink of an eye, another friend or family member is being taken. It's unbelievable the amount of deaths I've already lost this year. 2 suicides, 4 alcohol & mental health related deaths, & 1 natural age related death . Almost all died far to young, aged between 40 & 56 ... So tradgic & sad. All those beautiful people have just vanished, from my life forever. I don't mind admitting I'm very scared & left unprotected. So I shall be saying goodbye to the outside world, & will be staying put at home, alone. I have 2 people in my bubble & am lucky to have a lot of good friends on line. Plus feel blessed & lucky to have a beautiful garden to retreat in ...... That said, I still feel vulnerable, & very isolated, given my immediate situation. Roll on the 27th of August & fingers crossed I get the go ahead. Hoping you all manage to stay safe out there. <3
So sorry for your losses. I do understand how scary it is to leave your home. I try not to go anywhere unless I really have to and I've had both jabs. Like you I have a garden to.sit in and relax. Luckily my husband loves to shop and even likes supermarket shopping, something I'll never understand, so I'm ok with staying put in my home. Hopefully all goes well and your vaccination can go ahead soon.until then keep safe.
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I've since heard more of my friends have tested positive & are self isolating ...How darn frightening ... trying hard not pre-empt, who will be next 
I wrote to my MP regarding reduced vaccine effectiveness in people on immunosuppressant medication - here’s the reply.
Info fo vulnerable people 
Off topic maybe - petition for antibody testing for immunosuppressed 
