If you're immunosuppressed and need company I'm here

[SoisGentil]

Thought someone else might need this too. I'm in the group where the vaccine doesn't work and at high risk of bad outcome with covid. My life has shrunk from perfectly normal- working, busy social life, travel, restaurants, cinema, parties, concerts to just walks and zoom calls. Just normal.

With life going back to normal, everyone is busy and people don't want to meet outside when they can be in a cafe or pub or at a fun event. I'm keeping busy but at times feel like a non person. When there were masks and lower levels I was risking the odd event or cafe.

I don't like to complain in real life as people don't know what to say, or don't understand, and I'm even more likely to be dumped by friends and family if I'm not fun when I do see people. Today lots of friends are meeting up at a big event and it's the first time I've not gone. I feel guilty as my partner also chose not to go.

I know I'm lucky as we can just about afford for me not to work but it does put more pressure on my partner and makes me financially vulnerable. We have a child at school but that is a risk we take as they need to be with friends and learn.
Just looking for people in similar situations and how they are finding life when the covid levels are so high.
I probably sound like a right miseryguts but I'm not normally

For the pp who is taking azathioprine - I am also taking aza and had an antibody test a couple of weeks ago and I did have antibodies. Just wanted to reassure you it’s not a given that we won’t have them.

Checking into the same boat here!

Has anyone heard when we will get our 3rd vaccine?

@Carameljack that’s great!!! When were you vaccinated?

Oh amazing @Carameljack, I’ve been waiting for a post like that!
Can I ask what vaccine you had? And what dose aza you take? Bet it’s a relief to know it didn’t stop the vaccine being effective for you x

I had covid in January (mild, seemed to suffer less than DH who is in perfect health) then had AstraZeneca in feb and April I think it was. I’m on 50mg aza. It has reassured me a lot.

DP is immunosppressed (name change for anonymity with other posts!). He doesn't make antibodies to anything, let alone Covid. he is living life fairly normally on the basis that it's no life if you don't live it. However, we haven't been to big indoor gatherings etc, although in fact have a couple of (delayed) theatre visits booked which I am slightly anxious about, but I'm guessing we will do.
We have young adult family working in schools, socialising etc so the biggest danger is probably from within the household. None of us has had it so far.
He's had the vaccine on the babsis that it's unlikely to do any harm & may help his T cells (he won't make antibodies).
He is pinning his hopes on the antibody therapy which has recently been approved!

That’s roughly 1% body weight when I checked the dose against the recommended dose for the booster.

Sorry I mean 1mg per kg of body weight. I think anyone taking 3mg per kg or more is getting the 3rd dose

Yes I read this about 3% for the booster. I’m on 100mg but still wouldn’t be 3% so must be classed as low dose.
Can I ask where you got your antibody test @Carameljack

I got randomly selected for it. I know people who have been able to select one after a pcr so worth keeping in mind if anyone you live with develops symptoms, see if there is a box to tick when you book. You can definitely get private antibody tests and I would have paid for one before any boosters just to see if I had them first.

I got an email today from DHSC which quite clearly distinguishes between (a) the 3rd primary jab for CEVs on immune suppressant meds, and (b) the general booster.

So I tried to book my 3rd jab online but it says I can't.

Any ideas? My GP won't take queries about covid vaccinations.

(I'm definitely on one of the qualifying meds for 3rd primary jab - a TNF blocker, for over a year, and for 6 months prior to first jab.)

That's interesting you felt it was clear Spindle. I fall into both groups and I'm still confused. But I was invited so off I went.

Hello all, my husband is immunosuppressed because of medication he takes. Was on adalimumab and recently changed to Ustekinumab. He's got crohns, type 1 diabetes and thyroid issues. He shielded at the beginning but then returned to work and we've been living a kind of normal life but with kids at school and me working in a school we knew it would be a matter of time before covid came into our home. Husband had his third vaccine last week but don't know ifcthis was an actual third vaccine or the general booster. He got a text and went to our local centre. He had AZ for the first 2 and pfizer for the latest one. Also had his pneumonia vaccine recently.

My 15 year old Son started getting cold and sore throat symptoms Tuesday. His LFT was negative. He stayed home yesterday and LFT was positive so pcr test last night and awaiting the result. He was supposed to get the vaccine as a 12-15 living with an immunosuppressed household member but our ccg has been incredibly slow and still no sign or of the general school vaccine program for this age group.

I'm really trying to stay positive and hope that his pcr will be negative or if it is positive that husband is going to be OK. There's no way we can isolate within our house. Husband is 55 and normal weight and going through a crohns flare up. Since the schools went back we have felt the most vulnerable from any other point during the pandemic.

Oh mrs that does sound really worrying for you all. I know what you mean about feeling more vulnerable now than ever before. Fortunately we managed to get a jab for dd in August but my youngest is too young.
I hope none of you get it too badly.

Thank you and best wishes to you and everyone else in the same boat.

My DP has had the 3rd vaccine and has been advised he is in this group. He had no idea never had to shield and has gone about business completely as normal. He has also just had a flue and pneumonia vaccine. We have 2 kids in primary and mix office and home work and go out normally at weekends. Not sure if this is reckless or not just expecting the vaccine to do its job if needed no one has advised him he wont have produced any antibodies so sounds like his circumstances are different to yours though.

I am supposed to be on immune suppressants - which I was at the time of jabs - and so I am still waiting for jab 3 - I think I really hsould have had this by now - it's a frustration.
2 of my 3 had a vaccine 10 days ago - beating the school programme by a couple of weeks.
I have held off a return to a less painful life by not going back on meds - partly as hospital advised the 3rd jab first ifp possible.

I am carrying on as normal mostly - but only go out to local small shop and post office. I sometimes give DD's friends a lift - we all wear masks in the car. But she's at school with them anyway!

I am not personally clinically vulnerable, however I have been babysitting a friend's wee boy in her home 2 days a week since she had to withdraw her son from nursery as her dad is needing more chemotherapy. She lives next door to him on their farm and they work the farm together. Her wee boy adores his grandpa and would be devastated to be separated from him. I am therefore keeping low key and outdoors 5o protect them, since myself and my wee girl are in their home 2 days a week and obviously carrying, cuddling and (on the case of my wee girl) sharing food with the wee boy. I am terrified of bringing anything in which couod make grandpa ill.

Relieved that Son's pcr came back negative. He has a hacking cough but not covid!

Good news mrs :)

Who is supposed to get a third jab as opposed to the booster? I’m on adalimumab and when I did an antibody test I did have antibodies but quite a low reading compared with most people who had had two Pfizer jabs. No one has specifically mentioned a third dose to me but I was called for the booster a week ago.

Hi. The list is at this link. www.gov.uk/government/publications/third-primary-covid-19-vaccine-dose-for-people-who-are-immunosuppressed-jcvi-advice/joint-committee-on-vaccination-and-immunisation-jcvi-advice-on-third-primary-dose-vaccination If you are entitled to a third vaccine you may then be eligible for a booster after that too.

I've ignored the lot. Never shielded, still not fully vaccinated (but will be soon), take 3x immunosuppressants + 2x severe autoimmune diseases... I've worked a really risky job throughout and never WFH

But I have a reason, not just because I can't be bothered with it all (I can't I mean I genuinely have never worried about catching any of the varients)

I'm not fussed about getting covid. As it goes I've had it and at the time I was also taking very high dose steroids, and was absolutely fine. I've currently got a cold now that's worse (PCR tested definitely a cold).

But my reason is that the illnesses I have severely limit my life, my ability to parent the way I'd like to, the ability to work as much as I want to, the amount I can socialise (not much) and ultimately at best they will result in several altering major surgeries, or they'll just be fatal. They already have been fatal by causing one early miscarriage and one late stillbirth. I have for the last 15 years been in hospital at least twice a year for a prolonged period of time, and I alwsys will be for as long as I'm on this earth. If not admitted, I am constantly needing invasive procedures and monitoring.

So I can't be arsed with covid. I give up enough of my life anyway, and face enough risks to my health every day anyhow, that shielding was just never something I was prepared to do. No way would I limit my life further when it's already pretty limited.

That's just my take on it. Covid just isn't on my radar, I'm not interested in anything else that could limit me. I respect anyone else's approach.

How is everyone doing?