GOVERMENT SEEMS TO HAVE FORGOTTEN THE IMMUNESURPRESSE... - NRAS

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GOVERMENT SEEMS TO HAVE FORGOTTEN THE IMMUNESURPRESSED AUTOIMMINE

trace58 profile image
trace58

Watching the brief on TV just given by Boris etc I am feeling anxious , no social distancing etc, they show the slides and mention how everyone had 80% plus protection from the vaccines which is great but not everyone has this we don't know yet !! and some of the most vulnerable who they sent letters out saying we are CEV are just ignored now! they do know about us and we are never mentioned ! And they know that there are thousands of young and old Autoimmune Immunesurpressed who do not know if we have enough protection yet ! they know we are still at risk yet no mention, and all help is being taken away , and people forced to go back to work at risk including Immunesurpressed Doctors and nurses, I'm disgusted and feel let down what does everyone else think

100 Replies

Of course they did .... and I am disappointed too but maybe something else will come in a text reiterating the Gov.uk last info re still being cautious and distancing and not being indoors and not in crowds. There is no guarantee the vaccine has worked for us as you say and especially in some of the higher spec B cell depleting meds like mine. Time will tell if people come back with a variant from their foreign hols.. would be such a dreadful shame as we don’t have any new deaths today and cases low. We were there before though last July. We’ve almost cracked it yet they want to chance it.

I just said the same thing to my hubby. I work in a school and masks look like they will be discontinued.. don’t care I’m wearing mine

Neonkittie17 profile image
Neonkittie17 in reply to J1707

Should not do away with masks. Scientists and Hancock said they wanted people to wear the masks till end of the year.

J1707 profile image
J1707 in reply to Neonkittie17

I agree but think Johnson will override it is my way of thinking 🤨

Neonkittie17 profile image
Neonkittie17 in reply to J1707

Hideous man

J1707 profile image
J1707 in reply to Neonkittie17

👍

👍👍

joanne2 profile image
joanne2 in reply to Neonkittie17

Who is a hideous man?

AgedCrone profile image
AgedCrone in reply to J1707

Nobody can tell you NOT to wear a mask.....only suggest when it really is necessary to wear one.

J1707 profile image
J1707 in reply to AgedCrone

Children find it difficult to interact with staff when wearing masks . More and more teachers are not wearing them . I had to remind a colleague the other day to wear one in the staff room she was less than a meter a way.

AgedCrone profile image
AgedCrone in reply to J1707

This is going to be something we will have to learn to deal with isn’t it?We can’t put the genie back in the bottle....so we just have to learn to do what keeps everybody feeling as comfortable as possible ....those that are very fearful now will hopefully find ways of coping.I had a lovely time the other day with a 10 month old who thought my face shield was hilarious.....especially when her daddy drew a funny (well funnier then mine) face on it!

joanne2 profile image
joanne2 in reply to J1707

I saw an advertisement for see-through masks to help deaf people see your lips to lip read. I am so sorry I don't have any more details, but they are out there if you research. Good luck.

Neonkittie17 profile image
Neonkittie17 in reply to J1707

He’s never known how to to keep his nose inside his anyhow. 🤨🤥

I’m

Just anxious 😩

bpeal1 profile image
bpeal1 in reply to J1707

Nobody can tell you not to wear a mask, it’s just not mandatory. The problem with mask wearing is that you lose so much facial expression and I hadn’t realised until I went to a meeting yesterday how much in those situations you rely on lip reading as well as listening. These things have got to impact on children’s learning.

Spin1959 profile image
Spin1959 in reply to J1707

I’m the same. I work in a SLD school and want masks to at least be used in communal places like corridors and staff room 😡

Wish he’d eff off

J1707 profile image
J1707 in reply to Neonkittie17

That’s what we shout at the TV every time he appears . Use to be trump 😂

Neonkittie17 profile image
Neonkittie17 in reply to J1707

At least one of them has gone .. a bit less toxic

joanne2 profile image
joanne2 in reply to Neonkittie17

Who?

I think we will all be protected because if you reduce the transmission then CEV or not the risk is considerably reduced. And they did say on BBC news that Pfizer is now proven to have reduced deaths by 97%. AZ will be similar, and sooner or later we have to open society we can't live for ever in isolation. I am going to be being careful but very pleased that I can meet friends indoors so really its up to the individual if you don't feel safe then its ok to carry on social distancing but the a new version of normal is very welcome. I've had both Pfizer jabs and don't feel letdown at all or ignored at all, just very glad to see family and friends and hug the granddaughter too,

I’d feel much the same ... if i didn’t take Rituximab and have chronic bronchitis.

And I've got CKD so a kidney function of GFR of 22, Brochectasis, and a few other conditions. And to be frank my risk from kidney disease and clots is a lot higher than from RA, as most covid deaths are from kidney failure and blood clots but I still feel the same at some point we have to open society up and people need to be careful as it was made clear , but we can't keep on in lockdown forever. And if we are jabbed the risk is minimal but we should not be complacent just careful. We have to manage our own risk.

Yes a lot to think of there too for you and your other growth as well as RA health. I’ve been told by two consultants and one biologics nurse not to stop being “super cautious” as long as on Rtx and as long as I have severe bronchitis which often goes to pneumonia every other month, so until Rtx and I part company, that’s what I’ll do.

No guarantee Rtx won’t linger in the system affecting Ig/immunity for years after, but time soon to try change. Three years of bronchitis and pneumonia every other month is far, far too much. I was told by my biologics nurse the immunologists see patients who’ve had two to three episodes of bronchitis/pneumonia a year.. I’m getting 6-7. Time to see if stopping Rtx can stop these episodes. Then less immunity issues hopefully. Also the fact a lot of people don’t understand is that Rtx depletes your B cells which affect your T cells for the efficacy the vaccines. We just don’t know they’ve said how far it would work on Rtx patients.

Was reading in the British Society of Immunology .. so not scaremongering articles at all .. that for those on Rtx the efficacy is likely to be much lower. My B cells take an age to repopulate so likely I hard very few if any returning when I was vaccinated even 6 months after. The biologics nurse said this is very likely for me.

Believe me if I didn’t have repeated severe bronchitis etc and on Rtx and didn’t live in the area topping the Covid charts 🤨 all the time I’d have done a lot more and why I feel it’s too restrictive for me to be on Rtx given my repeated bronchitis.. It’s what’s right for each of us and our meds and comorborbidies. I don’t want to shield permanently on Rtx. I feel relieved I’ve made the decision actually. Rtx has been a wonder drug but it’s causing immense issues now. x

It's all so confabulating and discombotulating isn't it ? If it helps i had several bouts of chest infections and I think it was nine lots of antibiotics and a couple of chest X-rays a few years ago. Still had a crackle and cough etc and then my RA nurse said get the GP to do a sputum test. I did and got a phone call come into surgery now! They had given me antibiotics that the bug was resistant too, so could have swallowed twenty lots and still had an infection. It was an awful time, so I was referred to Respiratory Consultant and put in the CT scan then the chamber where they measure breathing etc. And a blood test taken, the CT showed Cylindrical Brochectasis which I was born with as its genetic but it was ok right up to the time I got the bug. The right antibiotics did the trick plus the Pulmonary Exercise lessons which ran twice a week for 3 months and been ok since. But they did teach us how to do huffing to clear the chest and I do have a pack of rescue pack antibiotics in the cupboard as well. I know it's awful my chest really used to hurt and I'm sure the GP thought 'not her again !" he was so apologetic as I had told the truth and swallowed all the antibiotics prescribed but they just didn't work as I'd said all along. I just want the sun to shine now as its raining and a meal in a nice restaurant overlooking the river and I suspect a lot of others do, but I shall be careful and not take chances. So stay safe and lets hope that the end of this dreadful time is in sight. xx

Thank you M-L .. as always you make me feel better. I’ll reply a bit later as my phone is acting up sticking when I try type. xx

That makes a lot of sense what you’ve said about the wrong abx and I’ve had all the spirometry and FEV which were all excellent and after the initial xray which showed pneumonia and first lot of Doxy abx back in early 2018. CTs were all clear thereafter and the consultant said nothing to be seen and strong lung structure and capacity. Bronchitis due to background immunosuppression. I need to be able to do a sputum sample I agree with you there. Tried last time and the lab said it was contaminated. 😑 I wonder if some bacterial infection causing bronchitis can keep recurring for three years as it is not getting cleared out properly. A lady at my hydro club once told me she’d had pseudomonas for 2 years as she wasn’t taking the right meds and she had been in other spa pools abroad and caught it there. Her doc asked her about spas etc and it came to light this way as she didn’t know of this bacteria. I’d never heard of it either. I had no idea until recently how many types of pneumonia there are.

I think if we can control safety with the foreign travel we are likely to see things keep calmer. I am surprised we’ve got so much of the U.K. vaccinated .. very pleased. I hope you get your safe restaurant visit overlooking the river.

Wow, what a crazy electrical storm here in West Yorkshire ... I’m still under the duvet and feel my tulips and narcissi could have been battered. 😑 xx

All my chest problems started in a hot tub on a cruise ship, bacterial soup anyone? lol xxx I think if I hadn't picked up a rotten bug then the Brochectasis would never have been a problem as it wasn't before.

An electrical storm wow ! and my daffodils and tulips died 3 weeks ago. In the South East spring comes early and goes early too. I've had lots of anemones and love to cut for flowers indoors as they last a fair while. And I'm looking to go to the local nursery this week to order the hanging baskets and bedding plants. It has no cafe but is just a good old fashioned (and cheap) nursery where they still do propagate and grow their own. I had to face reality last year and sell my greenhouse but my husband made the area into a new seating decking area and so as its down the bottom of our garden it gets the sun late in the day. My apple trees are full of blossom and even the high winds we had, have not damaged them. Hopefully the danger of frost is over ? xxx

I recall now your hot tub issues. 😑 Sorry to hear that. I’ve never gone in them really ... once in a health club 30 years ago but I was going in a hydro pool 2018-2019 for over two years where one attendant didn’t even clean the changing rooms. Ankle deep water. Sometimes very clean and sometimes dirty. You never knew till you got there. The younger ones were trained and observed hygiene and everything properly. The showers backed up sorry water too at times . We all did messages of complaint in the feedback box.

Wondering if any pseudonomas got to me on top of the pneumonia I had a few months earlier in January 2018. I can’t seem to provide enough relevant sputum to do a sample except last time but it was contaminated at the lab. 😑. Consultant said to keep trying. Hoping once off Rtx later in the year I light geve note immunity and resistance to the bronchial episodes. I’m wheezing and coughing at the mo again.

My tulips and narcissi were safe from the storm. We didn’t plant half the bulbs till November so we have late blooms although we had our established daffs and crocuses in Feb. My new large bulbs such as black parrot and ice cream are just coming to try to bloom and they’ll be in full bloom end of this month.

I’ve ordered bedding plants and perennials from online from very reputable and lovely growers. I also am about to make an early order of bulbs to arrive in September/October from Farmer Gracy again. Their bulbs are amazing. Your apple blossom sounds lovely. We don’t have that here but did at my childhood home. That and mock orange trees. The smell of mock orange is amazing. I hope the frost has June now. Waiting till the weekend to sow some seeds outdoors. xxx

I've got a big 'Rochester Belle' (I think it was called years ago) orange blossom in the front garden. I'm going to look at Farmer Gracy as you say the bulbs are amazing as you can't have enough Spring flowers. I'm glad your tulips survived I love all the colours and have put in a number of different Dahlia's for cut flowers. I like flowers with a connection so have a lot of Delphiniums called ' White Wedding' from the connection from my DIL's bouquet and am a sucker for plants with names that match ours !

I love the names too! Your orange blossom tree sounds lovely.. I can still recall the smell from the one in our old garden. Farmer Gracy are totally superb and yes a little pricier than some places but their bulbs have been amazing. They come in little paper bags all labelled and staples shut inside a big box with plenty of ventilation holes in and instructions. I didn’t plant mine for a month or so but kept them cool and dark but ventilated until I opened them and they were perfect. Plump and healthy. I’ll be doing my order for September/October at the weekend. I’ve never had delphiniums! Not in my garden but we had some at home. I love tall flowers. I’ve got lots of foxgloves seeds although some won’t flower till next year, some are supposed to bloom this year. White, peach and yellow. I usually grow some from a hollowed out stump which looks pretty. I’ve also ordered some small foxglove plants. I could go beserk as we’ve got four new areas of soil beds since my OH cleared out/re-jigged some of the garden. I’ve plans for foxgloves in one and a purple clematis growing up of a slim tree. xx

OOhhh sounds lovely, my garden keeps me sane. I used to do it all myself but can't now and nothing beats an overstuffed border of cottage plants. lol xx

I can’t dig or bend .. but I do all the higher raised beds and pots and baskets.

282523 profile image
282523 in reply to medway-lady

I think it’s much harder for those of working age with children or expected to go back to working in schools, public transport and offices and of course key worker roles.

Green230461 profile image
Green230461 in reply to 282523

I agree

Neonkittie17 profile image
Neonkittie17 in reply to 282523

Very much so 😑

I can understand why some feel let down and although I have had both my AZ vaccinations I'm also on Rituximab like Nk and others, so we have no idea how much immunity to the coronavirus we have. There was research being conducted in the hospital whilst I was there today for patients having infusions of some other biologic drugs to measure their covid antibodies. The nurses were saying "we have to learn to live with covid" and I think that's the important message. It will be very hard to eradicate it completely from the globe and when we have nearly achieved it perhaps another equally dreadful virus will emerge. So I will continue to try to keep a safe distance from strangers and be very choosy about whom I invite into my home. At least the summer is nearly here and we will be able to ventilate our homes and indoor spaces.

I can appreciate that it will be hard for some of those going back to work; trust in managements' implementation of necessary safety protocols will be important. Others are keen to see families and friends again. It's a really difficult balance to strike and I don't envy the politicians and scientists having to make the decisions.

I think it's an interesting question as the crowds on Kent beaches last summer did not produce one single Covid patient according to Public Health England. I suspect over time it'll be like the flu jab we just get it and forget it. I do feel though that very strong controls should be kept in place for foreign travel and a holiday is a good way off.

I’m praying your sensible words will come true. x

Knip profile image
Knip in reply to Lolabridge

I think we'd feel more confident if we were being tested to see whether we have developed the required antibodies to fight C19 should we come into contact with it. I know that's impractical given how much pressure the NHS is under but for me that would make a huge difference.

Lolabridge profile image
Lolabridge in reply to Knip

The NHS don’t offer them to patients at the moment unless they are involved in a research programme. You could buy an antibody test privately - I see the Lloyds Pharmacy website offers one for £50.Other suppliers are probably available too.

Knip profile image
Knip in reply to Lolabridge

I have just looked that up online and see that BUPA also do a test. Thank you for that. Take care and stay safe.

Neonkittie17 profile image
Neonkittie17 in reply to Knip

It’s the thorough interpretation of the DIY type antibodies teats which is important. We may get incomplete or insufficient interpretation. I also understand from two people I know that they’ve participated in trials but been told they aren’t allowed to know their results!

Just don’t like Boris’ attitude .. but I never have..

Text

I think we have just got to decide our own way of coping now.....we have enough information to know what we should do & we really must be thankful we live in a country that has had such a successful vaccination programme & not somewhere like India where those poor people must wonder whatever is happening.

I can remember going to school in the 1950s when you wondered if the girl sitting next to you yesterday was going to be there today.... or was she in the hospital with Polio? But we still went to school.

We all have to make it through pandemics as best we can.....and here in the UK things seem to be headed in the right direction thank goodness.

If you feel you need to stay distancing & not go to restaurants or visit friends & family...just wait until you feel comfortable doing that.

We must try to get back to a more social way of living at our own speed....we don’t want to depend on the Government telling us when, what where any longer ......do we?

I just hope the UK does not blow the huge advancements made by opening up to soon.Yes, we need to learn to live with the virus, but not everyone is vaccinated within the UK and the situation in much of the rest of the world remains precarious 😥

Neonkittie17 profile image
Neonkittie17 in reply to Mmrr

Yes me too. 😑 You’d hope they’d learn and scientists are urging caution and Boris is going all over without his mask. Germany has been in a bad way too just recently and not out of it yet either and they are close to us. Boris is all excited about “the peb”... sorry I’m not feeling his “enthusiasm” on everything just yet. His arrogance about “irreversible way out” made me really annoyed. If I had an immune system that wasn’t so compromised I’d be less concerned I’m sure. Has he forgotten how unwell he was ... er, yes! x

joanne2 profile image
joanne2 in reply to Neonkittie17

Think about it. The PM is upbeat to keep our spirits up, how would we feel if he was all doom and gloom with a miserable face. He and his team have worked so hard under very difficult unforeseen circumstances and I am extremely grateful we have such a wonderful PM at the helm. I don't know where we would have been without them.

I have to say. I’m very nervous too. I’m on Infliximab. I live in Covent Garden. So i’m in a real tourist hotspot. Near loads of theatres. Really dreading the crowds. I have loved having London’s streets to myself. At least i’ve taken some lovely photos. Some look like it’s the end of the world! I actually might have them enlarged & framed. This is a time in history, we will NEVER FORGET. Although some people might never want to remember. I really feel for people that have lost family members. How awful. Still stay safe everyone. X

Neonkittie17 profile image
Neonkittie17 in reply to Vixen2

You too vixen. I love Covent Garden and was there for my birthday in December 2019. Last little break we had for a week, shopping and going to the theatre and art galleries. 💗x

Vixen2 profile image
Vixen2 in reply to Neonkittie17

Hi Neonkittie17.I have a Housing Trust flat, which is right off Drury Lane. I waited 6 yrs for it. It’s cosy. So i’m so glad it’s not big. My arthritis wouldn’t let me have a big flat. I couldn’t clean it. It was actually all my health stuff that helped me get this place. I applied to Peabody. They gave me more points & i was moved further up the housing list. That’s the only good thing that’s come out of my health problems! I live with a gotgeous, brown Syrian hamster called Eric. He’s always self isolating. So this pandemic doesn’t bother him!!!!

Vixen2 profile image
Vixen2 in reply to Neonkittie17

Hi Neonkittie again.This is Eric.

He cheers me up. If i’m having a painful, emotional day. I just look at his little face & can’t help but smile. Pets are great therapy. Especially during lockdown.

LoneEra profile image
LoneEra in reply to Vixen2

So cute 😍

Vixen2 profile image
Vixen2 in reply to LoneEra

I know. I fell in love with him at the pet shop. I thought. ‘You’re coming home with me!’ He’s so photogenic.

Neonkittie17 profile image
Neonkittie17 in reply to Vixen2

He is adorable! Lovely Eric. 💗 I would love a kitty again soon. Or any furry cuddly critter!

Vixen2 profile image
Vixen2 in reply to Neonkittie17

I know. Pets can keep you sane!! I put lots of toys out in my hall, shut all the doors. I lie on the floor with a cover over me & he uses me as a climbing frame! Very funny. But if i’m in too much pain, he has to go in his ball. The only thing is. His wheel makes a hell of a racket. Like a loud drum. I hope you get a kitty soon x

Neonkittie17 profile image
Neonkittie17 in reply to Vixen2

Oh my .. does the drum else up up at night? Not sure if he’s nocturnal! Sounds a real cute little character. He’s lucky to have found you. 💗X

Unfortunately we are going to have to learn to live with covid, it will be impossible to eradicate it. We also need to remember that lockdowns and strict social distancing cause huge amounts of mental health issues. With cases, hospitalisation and deaths so low I think it is important to start opening up to help those who have been struggling with metal health issues.

As for the briefing not mentioning autoimmune conditions and the immunosuppressed, it wasn’t mention specifically, but both the prime minister and the scientists both repeatedly stressed that people needed to remember that no vaccine is 100% effective and there would be some people still at risk. The prime minister also stressed that people should consider how vulnerable their friends and loved ones were before having close contact and that social distancing must be maintained with people you don’t know.

As for going back to work social distancing is still a requirement there, plus we need to remember that although the vaccine is not effective for everyone there is now a lot of evidence that it reduces transmission so we benefit from other peoples vaccinations.

Hi trace58 - I’m in Scotland but feel the same way although I keep getting texts and letters from our chief medical officer about still being vigilant - but not sure how this works in reality if going back to work, kids home etc. Here’s my post from a month ago so you can read responses. I had a more positive response on the Lupus U.K HU where most seem to feel like you do - maybe because people with lupus tend to be younger than the main cohort here.

I was told by a Covid trained HDU consultant the other day (she’s a neighbour) that we will get boosters like happens with flu - maybe different make each time - and we are being factored in.

But she was truly shocked when I showed her the huge long list on my phone of texts and letters I’ve had from Scot.Gov telling me I’m CEV and what this means. She said she had no idea what shielding people had been through until I explained. The toll on our mental health has been extra high I feel.

healthunlocked.com/nras/pos...

I think the difficulty is everyone having a different idea about what is safe. For example, my elderly neighbours and husband's mother and aunts have been meeting up indoors for weeks now. My neighbour's son is a Judge!!

My husband hasn't seen his mum (80 miles round trip) since before Christmas but I sense she and his aunts think he is uncaring for not going to see her, when they have been seeing each other. He's in a catch 22 situation, I'm CEV, he's a Health & Safety Officer and his relatives are elderly.

Last night on the TV they gave out stats that something like 3% of elderly will still end up with severe disease and in hospital or death after 2 doses of vaccine. If that stat was 4/100 then that's 1/25. Quite high stakes for elderly and vulnerable people, but I don't think they realise or maybe just don't care!

J1707 profile image
J1707 in reply to BoneyC

I have heard people say in conversations oh this will get rid of the deadwood. I’m part of this conversation and I say oh that means me 🤬it goes quiet. Unfortunately so many people are desensitised or brain washed.

LoneEra profile image
LoneEra in reply to J1707

Same here. Someone said to me “well it’s only people with underlying conditions who probably would be dead soon or useless anyway.” Wow. Like you, I said “That includes me.” There was a lot of embarrassment all round. And suffice to say I won’t be making an effort to speak with that person again.

joanne2 profile image
joanne2 in reply to LoneEra

Dreadful people. Karma will come back and bite them in the butt

Neonkittie17 profile image
Neonkittie17 in reply to joanne2

Hoping for my neighbour to get bitten as he’s the worst offender for face creeping. Such a hideous moron.

joanne2 profile image
joanne2 in reply to Neonkittie17

Sorry to ask, but what is face creeping? I have never heard that expression.

Kags1068 profile image
Kags1068 in reply to LoneEra

Wow - that's shocking 🙄

Mmrr profile image
Mmrr in reply to LoneEra

Good for you for speaking up.My uncle told me 'push the boundaries' like he did.

I explained that I am on prednisolone and have been on tocilizumab, it seriously did not agree with me, so I have no last chance saloon as it were. It seemed foolish after shielding and protecting myself for so long to throw it all away now.

But not everyone is like you was the reply.

Neonkittie17 profile image
Neonkittie17 in reply to Mmrr

Even family can be ignored if they are uncaring and nasty .... 🤮 x

We thought Brexit divided us but oh boy the pandemic has. Horrible. Just say .. you do your thing I’ll do mine and hope you stay safe. x

Neonkittie17 profile image
Neonkittie17 in reply to LoneEra

That’s like the vile neighbour near us. 🤮🤮🤮🤮🤮🤮

Mmrr profile image
Mmrr in reply to BoneyC

And this is the issue asking people to use common sense....simply put common sense does not exist....my common sense is different from the common sense of others. My commonsense says we are opening up to soon.

J1707 profile image
J1707 in reply to Mmrr

Yes I agree Mmrr. We can have all the common sense in the world but Jo blogs can have none.. whether it’s at work, In Hospital / Drs or shops we can’t protect ourselves in these situations if others have no common sense.

This is a government who made DNR (Do Not Resuscitate) orders for people with Learning Disabilities. Refused to give NHS staff a cost of living wage rise. Left many Disabled people without personal care. Has authorised face to face assessments for new PIP claimants, irrespective as to whether they are CEV or not… What did you expect!

hmmmmm .. I expect exactly what’s happening/has happened. 😑😑😑

Well I must say I can't deny I'm not nervous, I will speak to work when I return and get them to keep me in a less vulnerable position !!! I don't want people breathing down my neck in the place of work for starters, I have been off for months now and need to feel at ease to serve the public. I will be watching my back for a while, I can't just go from this to full on 'everything is fine'!!! I know we gotta get back to normal but I will just be careful, anybody at work with a cold can go home😂

If you have had 2 vaccines weeks ago then you should be more protected than those who haven’t but you can still use masks and keep your distance.It isn’t law to mingle and we are gradually introduced .Do what you yourself feel comfortable with

Can I just say even after my 2 hags I received a letter to ask me to participate in a clinical survey to see how the & what affect the vaccine had on my RA & immune system as I am on biological injections. I choose not to participate as my daughter said they arnt treating you for rials which I totally understand I am her mother after all but was a bit over whelmed by the letter as it led me to thinking are we wilt autoimmune diseases protected it so why did I receive this letter mind boggles 😬

AgedCrone profile image
AgedCrone in reply to CFergie

If clinical trials are not carried out on all sectors of he community we will never know the answers to the questions.

You would probably only have been required to have a blood test and answer a few questions .....which in the long term could save lives...& it would only take a short time out of your day.

Trials like this are necessary & voluntary.....so I do hope most people who are asked would take part...I know I would.

joanne2 profile image
joanne2 in reply to AgedCrone

I have a red patch on my arm 12" X 6" where I had my second jab 2 weeks ago.

AgedCrone profile image
AgedCrone in reply to joanne2

So if you were asked to take part in clinical trial & reported that .....it might throw up information that could stop it happening to you or somebody else in the future.

CFergie profile image
CFergie in reply to AgedCrone

I feel injecting biological meds into my body is stressing enough without being invited for trials

AgedCrone profile image
AgedCrone in reply to CFergie

But if answering a few questions could allow scientists to work out ways for you not to be so stressed....like which drugs cause the stress.....surely that would be a good thing?I don’t mean taking trial drugs...or having anything complicated ...just reporting what you have experienced on which drugs...a bit like a mini Yellow Card system.

It’s like anything in medicine....if we don’t tell the doctors how good or bad we are feeling...they will just presume we are fine.

Surely need to try to help with these simple trials.....

CFergie profile image
CFergie in reply to AgedCrone

From experience it’s more than answering a few questions & I’m injecting enough by myself i think with my own meds weekly & having bloods done weekly the bruising is horrendous so I choose to pass

AgedCrone profile image
AgedCrone in reply to CFergie

It is there for those who want to do it willingly.....it is not obligatory.Without trials and research we wouldn’t have the wonderful drugs we have today

Here is the advice on the gov.uk website for the CEV from 17th May:

“If you are clinically extremely vulnerable, you could be at higher risk of severe illness from coronavirus.

If you are clinically extremely vulnerable, you are no longer advised to shield. However, you should continue to follow the guidance for people who are clinically extremely vulnerable and are advised to continue taking extra precautions to protect yourself. It is important that you continue to keep the number of social interactions that you have low and try to limit the amount of time you spend in settings where it is difficult to maintain social distancing.”

So we are not forgotten or ignored just not specifically referred to in yesterday’s briefing.

AgedCrone profile image
AgedCrone in reply to Lolabridge

Just that good old common sense again I guess?

Lolabridge profile image
Lolabridge in reply to AgedCrone

Indeed. It’s what we do best anyway! 🙂

Nicola Sturgeon on the lunchtime news mentioned us 🎉 She used a phrase (which I have forgotten!!) which asked us to use our own judgement..

That does seem to be the way forward… I feel very sorry for those people who are CEV who have to go back to work… not all employers are great ☹️

I have had both of my Pfizer jabs and between them I had my rituximab infusion. I recently had antibody test to find if the vaccine had worked but they found no signs of antibodies in my system. My wife had had one oxford jab (NO RITUX) and her results showed plenty of antibodies. Just thought I would share.

Sorry to hear that. 😑 I’m sure I’ll be the same if I have an antibodies test as despite waiting for 22 weeks (almost six months) after my previous Rtx. I know my B cells repopulate slowly. I wish I’d not had my Rtx two weeks ago (5 weeks after my second vaccine and my vaccines were six weeks apart) and am going to speak to my rheumy about some immune boosting immunoglobulin as my IgG is low and it causes me to have bronchitis. Whether that helps me be less risk if can get some Ig to prevent side effects of my med, I am not sure but I want to change from Rtx to another biologic. Rtx worked so well to keep the RA at bay but if it lasts 9 months before B cells return then than means I’m very vulnerable with no or few B cells.

I was told to wait at least four months after Rtx for my first vaccine and not to have Rtx between vaccines. I know we have all heard and been given some differing advice. Sometimes not possible to hold off the Rtx.

I might not be popular saying this. But what the hell. I’m annoyed by the people (conspiracy nutters) that won’t have the covid vaccine. How selfish are they?? While people refuse to have it. We will be stuck in limbo with this awful virus. Very irresponsible!

J1707 profile image
J1707 in reply to Vixen2

Your right

Vixen2 profile image
Vixen2 in reply to J1707

Thanks J1707.I’m so glad when people agree with what i’m saying. I live in a flat. The corridor’s quite narrow. 2 of my neighbours on my floor aren’t having the vaccine at all. 1 of them has 2 kids. I think it’s highly irresponsible of him to not have it. The guilt he would feel if he got it & passed it on to them. I don’t share the lift with them. I’m having my 2nd jab on Thursday. I never thought twice about having it. It would be insane to not have the vaccine, if you have a compromised immune system!!!!

CripLady profile image
CripLady in reply to Vixen2

Morning… I share your anger. I live in a house conversion (two flats) and my neighbour knows I am CEV. We have a communal hall (even though she has her own private entrance at the back). She, her partner, his child, random assorted friends, have NEVER used a mask in that communal space. My life is at risk and they don’t give a f***. not even wiping handles down or anything.

Selfish, selfish people 😡🤬😩

Vixen2 profile image
Vixen2 in reply to CripLady

Hi CripLady. Your neighbours sound very selfish. I wonder if you couldd slip a note under their door? Try & make it a bit polite. Although i might find it hard to contain my swear words!! Just maybe say that you don’t mean to nag. But you’re considered vulnerable to this evil virus. I know you said they know about your condition. Try & remind them, that there are other people living in the house too!!!! Good luck. X

CripLady profile image
CripLady in reply to Vixen2

She has no concept of others…. when I have complained about her partner’s excessive noise she has called me a bully!!!! Ditto when I told her to stay out of my garden and not to cut my plants! Where do you even start!!??

Neonkittie17 profile image
Neonkittie17 in reply to Vixen2

Keep your distance from the selfish people. They’d be howling and wailing and letting everyone know if they were CEV/On immunosuppressants. x

People just don’t get it . It’s not always about them. Not having a vaccine leads to variants then the vaccine could potentially be useless.🤬

Neonkittie17 profile image
Neonkittie17 in reply to J1707

Awful selfish behaviour 😥

Hi trace58 agree with you 100%. I actually feel like they don't care about us and that they would be happy if we caught it and died because we are seen and talked about as a drain on the NHS with is really frustrating.

I am one of the people who have not been vaccinated yet, because I had my infusion in Feb, I can't get vaccinated for 6mths and clearly they haven't thought about people like myself caught in that category. I can only think of continuing living as if all these policies are still in place and be as cautious as possible for my own safety. It's such a same the government have failed to include us, sigh

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