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

49 replies

SoisGentil · 26/09/2021 16:34

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 Confused

OP posts:
Senso21 · 26/09/2021 17:54

Hey! So sorry you’re having a rough time - it’s so hard being stuck in lockdown mode when the world starts moving again!

Are you immune suppressed through health condition? Or medication?

I ask as I am immune suppressed through medication (azathioprine) but have decided to just live normally now for the sake of my mental health and my family. I do wonder if meds may have affected my vaccine antibody response, looking at maybe getting an antibody test done but not sure if it’s better off not knowing!

SoisGentil · 26/09/2021 18:05

Hi! Thanks for answering, glad you are able to join in a bit more. I bet you still worry though. Its hard to find the balance. When levels were lower I was more willing to go to somethings but now I think I can't as there's no mitigation round here. It's a medication I'm on which is bad for knocking out the vaccine, most people have zero antibodies on it, also on an anti organ rejection drug. I can't stop either so kinda stuck. I'm mostly ok but feeling a bit nostalgic today as I am missing friends at this event

OP posts:
SweetBabyCheeses99 · 26/09/2021 18:16

Do you want to do an AMA?! I admit had never realised the unfortunate people in your situation, beyond people who’ve had chemo or organ transplants. Would love to hear about how you managed pre-covid.

SpindleWorld · 26/09/2021 18:20

I'm fed up, too, OP. I'm on Adalimumab and my underlying conditions are all autoimmune diseases.

It's not as worrying as if I were on Rituximab, I believe, but still it's not great. I'm feel like I'm missing out on so much, like work conferences, socialising, book clubs, gatherings ...

GnomeyGnome · 26/09/2021 18:29

I'm also in the group that needs a third vaccine, I completely understand the feeling of fear, loneliness and like the world is moving on and you're stuck in limbo. I felt the exact same way but did make the decision to stop isolating as it was affecting my DC quite a lot. One is autistic and the other gets anxious a lot and they were petrified I was going to die. If this is any help at all OP, nearly 7 weeks ago I tested positive for COVID. I felt very unwell and did end up with a complication (blood clot) but compared to how I feared I would be and how I think I would've been without the vaccine, it was fine. Obviously there's no way of knowing how it will affect each individual but I thought I'd share my experience.

Senso21 · 26/09/2021 18:30

Yes it is still such a worry, certain situations make me feel uncomfortable but I try to push myself to do everything because I now think it’s a case of we’re all going to get it, it’s just a matter of when and how bad! I try to balance it out as in the drug I take puts me at risk, but my age is an advantage. I take it for an autoimmune disorder that is under control.
It’s a shit situation for us to be in though, I definitely have days where I can feel very afraid Sad

SandysMam · 26/09/2021 18:37

I am ECV and waiting for a kidney transplant. My kids are at school so I kind of feel avoiding other activities is pointless as if I am going to catch it, it will be from school. I’m living life and enjoying it. Not saying it’s right but I think I’d rather be dead than living a half life. I will have to shield for 3 months after my transplant though which will be tough! Thinking of you Op, the bloody virus is a nightmare and leaves us making awful decisions that are never easy.

SandysMam · 26/09/2021 18:39

Oh and I had Covid before the vaccine and was ok! Not immunosuppressed though but still ECV. It’s not a given you will be badly off, Prince Daniel of Sweden has a transplant and he caught it and was ok!

PastMyBestBeforeDate · 26/09/2021 18:43

Medication suppressed immune system here too. DC in different schools. It's not much fun. Fortunately I can WFH as can DH.
My teenager was vaccinated in August on my account and I had my third jab today.
Youngest is under 12.

SandysMam · 26/09/2021 18:45

Sorry op, ignore my posts, you aren’t looking for advice I know!! Just a safe space to have a moan so sorry about my ramblings!

NotMyCat · 26/09/2021 18:46

Same, CEV. Haven't had my antibodies tested but I'm immunocompromised

PastMyBestBeforeDate · 26/09/2021 18:49

I did have my vaccine antibodies tested. It wasn't encouraging news!

SoisGentil · 26/09/2021 18:51

Oooh lots of us! Smile Sorry you are all in the dodgy boat without a paddle too. I'm on rituximab which is a high risk one and my disease is also autoimmune and also a very high risk one.Glad to hear of some who have had covid and not done too badly.

Someone was asking before covid I just carried on as normal but take antibiotics all the time and some jabs which work better than covid jabs.

OP posts:
SoisGentil · 26/09/2021 18:56

SandysMam apologise, I hope you get transplant soon Thanks

I can cope with the limitations but when I feel people are not understanding the level of risk compared to last year, levels way higher and delta worse I get a bit fed up. From most people's point of view it's better than last year. I have older children and elderly parents and very happy to see them getting on with life

OP posts:
SoisGentil · 26/09/2021 19:01

Sorry SandysMam I meant no need to apologise!!

OP posts:
Grumpycatsmum · 26/09/2021 19:09

Similar here, although as both kids got covid last month and I didn't I reckon I must have some antibodies.

I do share your frustration though with people not understanding the ongoing risk. It's not really getting much coverage I feel.

SoisGentil · 26/09/2021 19:13

Yes, the messaging seems to be that the vulnerable are protected, but there is a group who aren't. I know there's not a lot anyone can do but an acknowledgment we exist and that masks and ventilation keep levels down would be good. Also am interested in ronapreve monoclonal antibodies as a preventative.

OP posts:
SoisGentil · 26/09/2021 19:15

Grumpy that's amazing you didn't catch it! I'm thinking if my child gets it I'll get it. Same with partner

OP posts:
PastMyBestBeforeDate · 26/09/2021 19:36

The monoclonal antibody treatment is definitely a good thing for us. And has been a sign that the immunosuppressed haven't been completely forgotten about!

SoisGentil · 26/09/2021 19:39

It's been given as a treatment but has been shown to be effective as a preventative. I'm hoping we will follow US in this

OP posts:
PastMyBestBeforeDate · 26/09/2021 19:50

I didn't know that :)

Tinpotspectator · 26/09/2021 21:41

I also (ECV) had covid before the vaccine and lived to tell the tale, and DH didn't even get it, and his health is worse than mine.

SoisGentil · 26/09/2021 22:00

TinPot good to hear too. Thanks for sharing

OP posts:
Workinghardeveryday · 26/09/2021 22:12

I am in the same boat, on meds mentioned above.

3 kids at school, dd15 said tonight yet another of her friends have got it, there are so many at her school, it’s just a matter of time before one of them bring it home.

It is such a worry. I think I would feel better if I knew of more people on the same drugs that caught it snd were ok! In real life it feels like I am the only one! I don’t know anyone else in the same situation.

GoldFrankensteinAndGrrr · 27/09/2021 10:37

I'm sorry you're feeling so low and worried OP Flowers

I'm not sure if I'm in this group or not (or about to be, really). I have RA and have been med-free since February last year (was due a review and new meds in March last year but covid meant my appointment was cancelled). I had a steroid injection to ease symptoms in July and on Friday I finally had an appointment with my consultant. I had another dose of steroid and am starting subcut methotrexate this week.

Of course all the questions I wanted to ask went right out of my head! AFAIK mtx affects the efficacy of the vaccine and makes covid riskier, but happily (!) I had covid last month, had it last year and am already double jabbed so hopefully for now I'll be ok. Unless the drugs affect your immunity retrospectively, if that makes sense!

The other conundrum I have is that DH's work started their return to the office last week after wfh since last March. Those who are vulnerable or live with people who are have the option to continue wfh - we're trying to decide whether it would be a good idea for him to continue to do so.

I'm writing a list of questions to ask on Wednesday when I go back to the hospital so I don't forget anything this time!

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