If you're CEV how much are you mixing?

[Highlanders372]

For the past 6 months I've been classed as clinically extremely vulnerable due to immunotherapy (infliximab infusions and 6 mercaptopurine plus prednisolone). I've been seeing my parents, working (in an office with 1 other person) and allowing teen DS to have his mates over (I stay in another part of the house out of the way). I'm just wondering what other people in a similar situation are doing? I've had 3 covid jabs and my flu vaccine. I dont know if I'm being over cautious or not, this treatments new to me and the label 'vulnerable' feels very fitting as that's exactly how I feel ATM.

I'm on methotrexate and have steroid injections for RA. I'm doing the bare minimum really, and it's getting me down so much. I miss going to gigs and this time of year, out for drinks/theatre visits/trips with DH so, so much.

My consultant told me to avoid anywhere that's busy, and public transport, which I can't as we don't drive. I have to get the bus for essential stuff like hospital appointments.

DH is wfh - his boss has been absolutely brilliant and so understanding (they all went back to the office a couple of days a week in September). It's getting him down too and I feel so guilty that he's stuck indoors on my account. My work was mainly done from home but dried up completely when covid hit, so at least that's not something I need to worry about.

We don't have any friends or family so not seeing anyone is thankfully a problem we don't have - it would be torture if we did.

I only started my meds this year (I was diagnosed in 2011 but was off them due to side effects pending a review, then covid hit and I didn't get to see my consultant until August this year). This Christmas feels even more restricted than last Christmas to me - at least then I could get on a bus to bring shopping home.

It's rubbish isn't it OP

Sorry to hear you're having a tough time with it. It is rubbish, it feels like we've been left behind! I find myself wondering if I'm being over cautious but with this treatment still being relatively new I just feel it's sensible to be careful as my immune system is under a lot of strain at the moment anyway!

Working is keeping me going, I can appreciate it must be very difficult not to have that. Are there any online courses you could do? No substitute I know but just something to focus on.

CEV on azathioprine- triple jabbed.
I’m living as I normally would, but it’s always in the back of my mind if I’m putting myself in too much danger.
I have young children in both school and nursery. Husband on public transport to London daily - so i just feel like I can stay home more and take some of the risk away, but the rest of my household as just as likely to get it and give it to me anyway!
Who knows what’s right or wrong, but I just got so fed up living so non existently x

Senso21 what have you been advised by your healthcare team? Mine have just said to 'be careful' but I don't really know how far to take it. I'm in a similar position to you whereby DS is in school, DH works with the public. I dont really want to mix at all but I'm very much an introvert and I'm worried that this is going to make it very very difficult for me to start socialising again once it's 'safe'. It's a kind of use it or you lose it situation where I can feel my confidence crashing and my anxiety going through the roof.

We consider ourselves vulnerable due age and some medical conditions, though not CEV. We've been very careful from before the first lockdown, and I agree that the lifestyle we are following to avoid catching covid is pants, and we'd rather not live this way. But we'd rather not be ill or worse with covid more, so we are just sucking it up. It helps that we are not social people. I sympathise hugely with CEV people, they have not been supported at all well throughout the pandemic, they've just been left to get on with it. No wonder their mental health is also suffering.

I'm CEV and have been going to (quiet) shops and using public transport when necessary. I don't do much unnecessary stuff including going to cafes, pubs or restaurants. I do go to dinner with family, we all do lfts and sit at a distance with an open window. Occasionally, I go over to a friends place but mostly meet friends outside. I'll probably be more careful now again because of Omicron but am planning to see family at Christmas at this point.

I am CEV and shielded until it ended. On Immunosuppressive drugs. After that I went to shops and met friends but didn't go to crowded indoor spaces. Adult DC visit and we don't take any special precautions.
I got covid in August, badly and was hospitalised.
Since then I have felt much less vulnerable as I feel it's done it's worst. I've had my 3rd dose and will get a booster.
I might be more cautious now until more is known about Omicron.

My mum is CEV due to immunosuppressants and methotrexate for sarcoidosis, and she is very frail. She only leaves the house to go for walks, and sees her grandkids when they are healthy and had negative lateral flow. Her consultant advised her to mix as little as possible. It's awful for her as she is desperate to live more normally but it's far too risky for her.

@Highlanders372 no advise really other than the bombarding of letters and texts from nhs in the early days telling me I couldn’t go in the garden
I’m on a low dose of azathioprine for colitis so I’m hoping I would be ok if I did get it. The way I see it is it’s pretty unpredictable anyway - healthy people are ending up in hospital and people with many health conditions are brushing it off without much bother.
It’s not going anywhere so I personally feel like I have to keep living while I’m alive if that makes sense. Who knows what tomorrow brings regardless of Covid xx

Senso21 crohns and colitis here, I was only on pentasa when the pandemic first started, thankfully! It's all flared up now so I'm on everything they can throw at me. I think because the treatments are new to me and the whole 'CEV' thing, its messing with my head a bit. Hopefully once I'm settled on the treatments I'll feel more like you do now.

Thankyou for all the replies, they've been really interesting.

CEV, due to severe neutropenia. Also on Xolair
Triple vaccinated and having a booster
I go to the odd shop and er, that's about it to be honest. I will meet people individually, am still WFH and wearing FFP2 masks

I’m CEV due to meds for an autoimmune disease but I also have an immunodeficiency. I’d found the restrictions were impacting my mental health too badly, so I’ve been living quite normally over recent months. I’m now wondering if I keep things a bit more low key for a few weeks or so. :(

@Highlanders372 I know it’s very scary to start with - especially as this CEV label is new to you. I was terrified during the first lockdown and unlocking. If you look on the Crohns and colitis website there’s a v useful flowchart which shows your risk in a simpler version. Might put you at ease x

I'm CEV and not currently working. 2 young dc in nursery. I'm seeing my parents and occasionally some friends (we do lft's beforehand). I have popped to the local shops during quiet times and have taken dc to soft play / panto.

It's hard but I felt really overwhelmed last year when shielding. We've lost two extenddd family members to Covid too

I've had both vacccines and booster

We've got CEV staff in my school, so they are mixing pretty full with the unvaccinated.