I am gathering experiencies/opinions about EVUSHELD
1/How would having evusheld change your everyday life? What activities would you do you are not doing now? How would you feel?
2/Advantages/disadvantages of evusheld in your opinion
3/ How has shielding impacted you? Are you still shielding? How has your life changed?
4/ For carers
How would evusheld impact your life?
You are welcome to comment, send me a message or email me at zoi@vasculitis.org.uk
Thank you!
My response to these points (I’m on rituximab, 33 year old, female)
1) I would still try and avoid getting covid as I’ve followed the Evusheld worldwide group on Facebook and see people still need antivirals and can feel quite unwell with it, but it would substantially lower my anxiety about it. I’d also likely be a bit more carefree outdoors in particular. It would make me more likely to go to the dentist and get other medical appointments. I have Barrett’s esophagus and in a year I’m due to have a scope which I’m dreading as there’s no masks and I can’t wear mine. Evusheld would remove this worry for me.
2) advantages is it would reduce the vulnerability of the immune compromised population to covid. We’ve been failed by the government and this would be a sign someone cares. Downside might be poor education about it and people thinking it’s 100% effective which might be dangerous. Others might also assume you can just go back to normal but the data doesn’t fully support that, though risk is substantially reduced.
3) still shielding. Broke up with my partner of 9 years due to not spending time together. Don’t get to cuddle my nieces and nephews. Haven’t been able to see friends. I’m lucky my family come see me and wear masks around me but because I no longer live close to friends I can’t travel to see them as I don’t feel comfortable staying with people. So very socially isolating.
4) if I had Evusheld my family wouldn’t be so paranoid around me so it would have a big positive ripple effect.
Are you hoping to get UK to say YES to Evushield?
We live in hope! I cannot see it happening in the next few months though, unless the hospitalisation numbers sky rocket and they are forced to action.
I want to know why “they” are so anti Evushield. Even the US are happy with it. I wonder if it is Astra Zeneca someone does not like? I am sure there is something else going on rather than just it being a new product.
Cost effectiveness is usually the problem. In my personal opinion when we are talking about treating less than half a million people ( less than 0.7% of the population) cost effectiveness shouldn't be the no 1 priority.
I am not sure in this case the problem is cost, there is some other reason. I am always suspicious!!
I have read this statistic of 500,000 CEV but in the letter supporting Evusheld, which many of the charities inc RAIRDA signed - this only mentioned England I think - which I took to mean that the real number for the whole U.K is probably significantly more? Unless writing England was a mistake and they actually meant that there are about 500,000 of us around the UK?
Hi Zoe69
Hope all is well, I will answer in order if that’s ok.
1/ It would change my life back to something like 80% normal, I would still be very careful but I would be able to do my job as an Investigator / Trainer in a classroom environment rather than via Teams from home. I travel quite a lot but we tend to drive everywhere but we have Railway 1st Class Passes (because of my rank before retirement) and don’t use them because of the risk.
2/ It’s all about reducing the amount of fear and uncertainty for me regarding everybody. Those of us who are CEV some have lost a lot of confidence since Covid and it would be like having an internal “minder” to be with you everywhere. We have suffered more then most.
3/ I am not shielding technically, it’s a bit of a semi shield. I am in Cyprus at the moment (see my previous article) my wife works in a shop and I work from home. My clients are understanding but don’t really understand the risks to us who are CEV and patience will run out. We still eat out but at quiet times. If we go to the pub we sit outside.
Finally let me try and explain what May seem as a contradiction Semi Shielding v Holiday in Cyprus.
1/ Travelled to airport in car.
2/ Travelled with Lufthansa (Masks still mandatory sat in seats of 2)
3/ Picked up hire car at Larnaca
4/ Drove to rented villa
5/ Eat in or restaurant sit outside.
6/ Cyprus decent Vaccination and Transmission rate.
So calculated risk but stacked with controls.
Nick
thank you for doing this zoe69
1 with evusheld I would feel a lot more confident about where I could go and what I could do. I used the p&r to get to hospital yesterday first time on a bus since before the pandemic. M family would feel more confident around me at the moment I think they are confused/frustrated about what I feel I can/can’t do.
2 advantages as above Disadvantages maybe feeling too confident.
3 probably the worse part of shielding was missing my young grandchildren not being able to hug them. Although this has kept other bugs at bay too. I haven’t felt able to get on a plane since either. I’m not shielding but I am very selective about where and what I will do.
4. My husband has missed out on life too. He does more than I do but lives with the worry he will bring Covid home
I will add I am in the process of signing up to the Protect-v trial. I’m just waiting for the protocol to be altered. This involves one infusion of Sotrovimab and monitoring the antibodies afterwards. I’m hoping I don’t get the placebo but of course not knowing whether I have or not doesn’t give me the confidence that I’m more protected.
Hi. I would answer these questions pretty much exactly same as Nick above. I am partially shielding. I think my mental wellbeing started to be too badly affected when I continued to fully shield. I follow the Facebook group and I’m not convinced that Evusheld is so effective to new variantsthat I would change my own behaviour much.
But, as Grizzly-bear has said, I would at least feel it was a sign that our wider society and governments cared about us as a group.
We went down to London from Scotland in February for a long weekend for my husband’s 60th, to celebrate with his twin and to see our youngest son. We wore FFP3 masks and I had to get special assistance on the BA plane - where many were unmasked and the seating arrangements weren’t as planned/ described. It was so stressful that I kept thinking I was going to hyperventilate. Never again - although if I had Evusheld I’d possibly go on a train first class.
Everything made me terrified and neither of my Londoner sisters could grasp how or why. I didn’t want to go inside public buildings, apart from our hotel (FFP3 masked) , even though it was chilly. I’m on a prescribed liquid diet so can’t eat out myself but my husband ate outside cafes and had takeaways. And old friends and his twin arranged a small party in their home after everyone attending had tested that same day.
It turned out that my youngest son and his partner had Covid and youngest came with us for the day having tested negative that morning - but then positive the next day. He wanted to only be outside and socially distanced from us all but my sister and husband put me at risk when they insisted that we all go into their work place for a coffee and so they could show off about their central London work location.
Yes it was all okay in the end for us Covid-wise. But I learnt from this experience that even those I’m related to don’t always grasp the high risks associated with being so immunesuppressed and will put their own selfish needs above my own safety and wellbeing.
My sons always point out that the reason they all take extra care when they visit is because they would feel so terrible if they gave me Covid. But ignorance is bliss and my sister and partner chose ignorance over love. And if they can then anyone can.
The other thing that has made me give up total shielding is that I have six weekly week long infusions as both inpatient (IV immunoglobulins) and day patient (Iloprost). I can’t wear my FFP2/3 masks for 7-8 hours a day during the day patient infusions as the infusion affects my skin and breathing. But most infusion patients are in same or similar boat so we all respect one another. Last time I met a GP with Crohn’s who was getting a biologic monthly. She has worked seeing patients face to face as well as from home, throughout the pandemic and has never caught it yet. But she researched and has worn the best masks from the start and insists on having her window open whatever the weather.
I’m in a side room for IViG so just I open the window and take extra clothing. The nurses and doctors are all masked but often not covering noses. I now think what the hell because I get such aterrible headaches and nausea /vomiting during this treatment so I just insist on my window being open. To be honest I’ve just resigned myself although I always explain why I’m vigilant and ask them to respect my extra vulnerability. They still mostly don’t understand about the open window or the polite request that they wear their masks properly even when I explain why. I’m not allowed home in case I get Covid and bring it back in to the hospital.
But they can do whatever they like once they leave work with impunity. Even my consultant agrees this makes no sense but it’s a blanket hospital policy so I’m resigned. I tell them I’ve lost 2 friends with similar overlap and treatments to complications of Covid recently and that does seem to bring it home to them more. But still they check I’m fully vaccinated and then shrug and say it’s not too bad then 🤦🏼♀️🤷🏼♀️
Getting Evusheld would help my feelings of alarm I’m sure. But I wouldn’t feel invincible or change my present partially shielding behaviour much I suspect. I can’t afford holidays and don’t eat out but I would feel less alarmed and frustrated when I have to be in NHS settings.
if you are getting bad headaches during ivig have they tried slowing down the speed of the infusion? Has anyone mentioned doing it at home yourself. I was scared of doing this but I found the side effects a lot less and saves the hospital visit.
Thavjx . Stupidly I didn’t click that headache and vomiting were IViG related until speaking to my neurologist at the end of the last one. I thought they were probably neck related but she said no they are meningeal but she didn’t seem too concerned. And yes I now realise that one particular nurse kept turning them up- mostly for her own expedience I think as she was the only one on those days.
I have asked about doing it at home but my neurologist says I’m on a trial at too high a dose so have to stay in each time. I’ve only had it twice 3 months apart so far over 5 days. X
hi Zoe
I am living with a partner who due to medication has no antibodies despite 6 vaccines!
I am much more anxious and careful than he is as I would hate to be the person who brought Covid into our home. I gave up my profession as it was in a high risk area.
Our life is not the same now and the gap between our life and others is becoming more pronounced as “Covid is over / not severe” according to those around.
We are not shielding but extremely careful . Coffee outside, meals out at quiet times etc. we have not been on holiday together or stayed with family and friends, birthdays and Christmas with family have been missed.
receiving Evusheld would enable us to have more confidence in mixing with others but we are now so “hard wired” to risk assessing each outing I think we will carry on as we are.
1. I feel like I am preparing to hibernate again as winter nears and Covid rates rise. Rather than visit my Soho office I will only WFH. I will not visit restaurants and bars unless I can be outside and I won’t use public transport or go shopping. If Evusheld is not made available for financial reasons it seems a false economy to me.
2. I don’t see any disadvantages but it would help me live a more normal life.
3. Shielding- in addition to all the physical constraints many of us already live with - has been difficult. The minute I let my guard down finally last spring I got Covid. For mental health reasons I have lived fairly normally since but will shield again.
4. My husband has been great but now does many things - like visit theatre, cinemas and concerts on his own
thanks for doing this Zoe
1. I’m still semi shielding, in that I wear a. PP3 mask in places where there are crowds, inside or outside. However I actively avoid large numbers of people if I can. I have seen my close friends … generally outside or in a well ventilated room. I am still very nervous about Covid as although I’m just about to have my sixth vaccine, I haven’t developed any antibodies as I have Hypogammaglobuliena… severe eosinophilic asthma , adrenal insufficiency as well as EGPA. Although I have been accepted for IVIG infusions, these have not started. Evushed would increase my confidence as I’m aware that with winter coming, Covid rates will rise and I will have to restrict the little contact I have with friends and family.
2. Hopefully have some sort of normal life ie… be able to see folk during the winter.
3. At least be able to see friends and family during the winter months with higher rates of Covid
4 Hopefully reduce the mental stress of the thought of catching Covid… at times I feel I’m screaming inside and my personality has changed over the 7 years I’ve had EGPA and especially over the last two years.
5. My husband is very anxious about the thought of me catching Covid … both my sons and their partners and my sister and cousins have all had it. All of them have been excellent in protecting us… to date neither my husband or I have caught Covid 🤞🤞🤞🤞🤞
v much relating to a lot in your reply: am 69 & have have childhood onset simultaneous autoimmunity illnesses so am on heavy immunosuppression meds + panhypogammaglobulinaemia (a Primary Immunodeficiency Disease so am highly unlikely to make antibodies even after 6 COVID Vaccs to date & being on longterm immunomodulation dose IVIG/SCIG)…only diffs being, we eere’t able to have children… & my husband has done his best to help protect me, & neither of us have caught COVID, but now I’m still shielding at home except for health appts, he is clearly wishing we could be more sociable again…so with my immunology clinic’s help I came up with these guidelines, & on Friday night we had our neighbour over for a sit down evening meal - after he’d willingly LFT tested neg mid afternoon. We had a great time together…
Will be updated as the situation changes, eg I may get COVID , but I do officially qualify for urgent antiviral meds
Hi Barnclown …. I’m lucky in that family and some friends have always taken LFTs before meeting up but we have had some close shaves. Our first grandchild was born during Covid and we have seen her throughout. Her parents are very careful in protecting me, even with colds etc. However we took our daughter in law and granddaughter out to lunch early in the summer, and my DIL developed Covid two days later…. It was uneasy week afterwards. In 2020 after a very restricted funeral for my MIL, a niece developed Covid the next day. Life was very restricted at the time so we only chatted in the car park as no gatherings were allowed at the time. I have definitely felt more relaxed this summer but as the Covid rates start to rise again… life will have to close down again. I still have a protected supermarket delivery slot but I had started to pop into shops with a mask on and keeping away from folk. If Covid rates shoot up again, life will have shut down again apart from medical appointments.
thanks for every detail. I think you’re doing it as right as someone like us can. We both have no family even relatively nearby & friends have to travel quite a distance to get here. This protects me a lot, but I’d feel very stranded without seeing family & friends via the internet.
My husband is a loner like me, but years ago his early onset severe Crohns went into remission & since then he has been determinedly making up for all those decades of illness, suffering & limitations. So me ending up being quite disabled & needing to continue shielding is tough on him & I feel determined to make sure he gets out & about even though he puts me at risk every time he comes home. It is what it is.
Lucky for me, he really truly understands severe chronic illness. Our relationship means everything to me. But now I do feel a burden, but I try not to dwell on that because after a lifetime of being very independent & seldom asking anyone for help with anything, I have no choice but to rely on him more & learn to offer up my needs when I simply can’t do stuff myself. Maybe this is good for both of us…& it’s definitely proven which friends & family are tried & true!
I'm so depressed by the inevitable misery of Sheilding for a 3rd winter. Having caught Covid from my social care team in February... I now wasn't safe in my own home and decided it was time to try getting out and about just a tiny bit. I'd had the antivirals (Paxlovid) and managed to stay at home during 2 weeks of suffering. Well, I insisted on staying home unless absolutely necessary to go to hospital. I always do. So, I survived and was sick of living in a state of terror. My already fragile mental health had been absolutely shot, it was hardly worth bathing, getting dressed or eating anymore. My 4 year relationship had broken down, in part due to me being locked in alone and becoming a shadow of my former self. Any muscle strength and fitness I previously had was gone, which has heavily affected my hEDS . I tried to remain as active as possible at the start, but I was stuck in a first floor flat and had my first GPA flare to deal with within a month of my front door being closed that March. Rheumatology appointments and care have been poor during the pandemic and I've suffered a flare each year, along with 2 hospitalisations for a chest infection followed by pneumonia. I believe the flares have had much to do with my incredibly high levels of stress and anxiety. They've left me with further deterioration of my nose, further nerve damage and more damage I'm sure. I've been so run down that I have been almost permanently too unwell to look after myself, too scared and vulnerable to be helped.
I suffered for months with Long Covid. Crashing out unexpectedly during the day (I've never been able to nap!) and suffering fatigue on top of my already substantial disability in energy. But as I said, I ventured outside. Luckily, I'd managed to move house almost a year ago. To an adapted council home, with a private garden. I would have faired better here in the height of the pandemic for sure. But the damage is done now.
I emerged from strict Sheilding in March. Being extremely careful still, but enjoying spending time with my family (who all Covid test before we meet) and making the occasional trip into shops at quiet times and in and N95 mask, just to touch things and feel like a normal human out in the world again. By July I had Covid again and although I was less frightened, I knew it was rougher on my weakened lungs. I'm suffering with double Long Covid now and I know I can't deal with another bout right now. So it's back to semi Sheilding again for me. My Rheumatology consultant is concerned for my lungs and I'm awaiting results of a recent chest CT now. With winter bugs and the obvious wave of Covid to come, I'm already battening down the hatches, whilst sobbing. This illness is isolating enough, without being left to fend for ourselves in this pandemic. It's been despicable, how people like is have been treated. I felt unimportant to the state before, but now I feel they actually want me to die and do it quietly.
When I heard about Evusheld, I thought my prayers had been answered! I excitedly told my friends and famy about it and was absolutely gobsmacked when I heard that the UK government had made some feeble excuse not to buy in this life changing and proven vaccination. I had looked forward to a winter of continuing to be careful, but feeling less terrified out there. I was excited to think I could be part of society again and have a real chance to improve my physical and mental health. I could take more risks, for the good of my health, like going swimming and taking part in group activities. Maybe even get dressed up and go out to a quiet restaurant! Simple things that I've had ripped out of my life for years now. To generally have a lowered level of stress an anxiety would be extremely beneficial to my wellbeing and Evusheld will give me that. I'm beyond gutted by the decision not to provide the vulnerable with any chance of Covid protection this winter, yet again. I'm not sure if I can make it through to Spring by Sheilding again and I don't think my body can handle more unadulterated Covid either. I'm left with such little choice about anything these days. Evusheld would have given me more choices and much more freedom. Please, please reconsider and do it now, not next April.
I too have been following the course of Evusheld being approved by the MHRA but the UK gov not buying it because they say the research shows it is not very effective against Omicron. I rung AZ medical information today and they say in-vitro studies show it is effective but I see that in the US they have added the fact that it isn't so effective with Omicron to their FDA Factsheet. I have also been following questions raised in Parliament, notably by Daisy Cooper MP for St Albans. It is now being re-assessed by NICE and they will decide by April 2023 (a long way off).
Dear Zoe. Ive been sitting on the edge of my seat for month's hoping this will be funded. I don't go anywhere, I don't do anything. It causes disputes since it sentences your whole family to isolation. If I go out for a walk I wear a mask under my hat and I spend the whole time looking over my shoulder. You can't relax , Your subconscious is telling you 'BEWARE' all the time. I've been waiting for this Evushield to be approved. My family are coming over from Aus for Christmas and I feel very vunerable but I can't tell them how very vulnerable I am. I was hoping I could get this treatment before they came but all I can do is to try to act as though I'm Ok. I have been part of a medical study and it showed despite 4 vaccinations I have no immunity. I'm under several consultants for different illnesses including Anca Vasculitus.
I think the Government would soon fund it if any of their family had this awful evil disease
tapering off azathioprine 
How many years have you got vasculitis?
Are you being treated with steroids for your rheumatic condition? Including vasculitis 
On a more morbid note... Lol
