Are you immunocompromised with kids? How do you cope with their illnesses? How do you manage their illnesses?

[Bumblingonby]

Hi, I'm going through a diagnosis process that seems likely to be rheumatoid arthritis. I have a young baby who for financial and practical reasons will be in full time nursery from 1 year (I know, not ideal but unavoidable I'm afraid).

Obviously she will be bringing back every bug going, and I'm terrified of catching them if I'm immunocompromised from taking methoxetrate/biologics. How do you all manage this?

I'd feel so guilty if I had to mask around her all the time and even if I did I wouldn't be able to avoid catching everything. Those of you in this situation, do you just back on ending up in hospital a couple of times a year or are the illnesses not so bad depending on dosage?

Thanks for all advice! From a worried mum who's concerned abiut nursery (and long term doesn't want her child to be restricted from socialising but also doesn't want her to have a sick mum...)

I manage by not really thinking about it. I don’t do anything any differently. I’m not sure if I caught more bugs than the non immunosupressed person. However when I did catch something, I did tend to be quite ill.
the only thing I wish I looked out for was being more aware of what to do when exposed to chickenpox. All I was told was to avoid people - but I mean, easier said than done, and does that mean - move out the home when inevitably your child gets it or?
anyway, I was never told. DC ended up with it. No one seemed to know what to do, eventually found protocol which said to first test my immunity for it. Found out very late in the day I had little immunity for chickenpox and it can be v dangerous if you catch it. So long story short - if you find yourself in same position make sure Dr check you assp. I was v v lucky.

I’ve been immunosuppressed since before having my DCs due to an organ transplant and I’d say don’t worry too much. I didn’t find I picked up every bug they had and didn’t struggle particularly with any of the general childhood diseases they caught but I’d already had chicken pox etc.

Covid has been another kettle of fish as obviously no prior immunity there, although I’ve only had it once. I got the antibody infusion and that sorted it out.

Thank you both! Anyone with specific experience of methoxetrate/steroids/biologics and nursery?

I have RA and am on Methotrexate injections and Rituximab infusions (biologic), so my immune system is shot.

I've had RA for 7+ years and a cocktail of different drugs over the years.

I just don't think about it and carry on as normal. If I become ill, I then take advice, which is what I've been told to do.

Was going to add, you'll be surprised how many bugs you don't pick up.

No experience of bening on biologics with nursery age kids since mine were both school age since I started, but I work in a patient facing role and a surprising number come to appointments with coughs/colds and other minor bugs. I’ve been on them for almost 4 years now, and wouldn’t say I’ve caught more than before. A couple of times I’ve been hit a bit harder by common colds than I would before, but who can say if it’s down to the biological or a different strain of cold bug. My advice like other have said is not to think too much about it. Follow advice from rheumatology specialist nurses and make sure flu and covid jabs are up to date.

Husband is clinically immunocompromised and I seemingly have a non existent immune system. We don't cope well, between us we've been hospitalised 5 times I think, sepsis, meningitis, infections requiring ICU stays. All seems to be traced back to illness that our child has had. I feel like we're just quite unlucky though!!

Just carry on as normal, just with all your vaccinations that you'll be entitled to have for free (although I'd pay for the flu jab in a pharmacy rather than wait for the GP to get through all the elderly people before they get to the younger groups). It's not like chemo for cancer.

I was on steroids, then immunosuppressied on Mercaptopurine (low dose chemotherapy) with 3 young children. I also worked in a school part-time. I found that viruses tended to hit me harder than the rest of the family, but nothing I couldn't manage.

My littlest ones in nursery had the chickenpox vaccine during this time, paid for privately. Chickenpox leading to shingles was my main fear. (My eldest, husband and I had already had Chickenpox as young children.)

We also all had flu vaccinations every year.

Something I found that may have helped was Neilmed Sinus Rinse. If I thought I'd been exposed, or at the first sign of symptoms, I would use this rinse with the saline solution. I believe it helped reduce the viral load I was carrying and lessened the extent of the ensuing illness. Salt water gargle too.

I'm off those meds now though, as my Ulcerative Colitis is currently well managed on standard drugs.

although I'd pay for the flu jab in a pharmacy rather than wait for the GP to get through all the elderly people before they get to the younger groups).

If your immunosupressed, you shouldn't need to pay for it, I never have at the pharmacy.

Thanks so much for your replies @HelpMeGetThrough @Swissrollover @BlueRidgeMountain @Boopbeepbeepboop @NeverDropYourMooncup ! They are very encouraging and useful to hear. Is there anything small that you routinely do to prevent infection like the sinus spray you mentioned or wearing masks in public, not having other people's kids round in winter etc? or do you really just do everything totally as normal and take advice when sick?

Steroids, biologics, cancer - never catch any bugs at all.

I’m immunosuppressed with a 2 year old at nursery and also works clinically for NHS. I don’t really get anymore bugs than anyone else to be honest and it’s not something I think about so nothing I do to prevent infection x

I know - however, when I was actually so skint that I had to wait for the invitation (as they kept on saying that it had to be done working back through age groups and i was turned away from the pharmacies because they didn't have any for the younger age groups - different vaccine - either, apparently), I was seriously ill from the second year of Swine flu. I got the text saying I could finally book the last week of November when they'd been doing them - and running out, so having to wait for new batches - since September.

It was the same with Covid vaccinations - the elderly were first, younger people like me on medication affecting our immunity were much later. So I caught Covid in the gaps.

That's why I'm saying get vaccinated as soon as possible, even if it means having to pay for it.

I have lupus and take a similar drug to methotrexate. I am also a full time teacher in secondary school. Very few colds, no flu for years and never had covid (although l have been having quarterly boosters).
To be honest, fatigue is probably the single biggest ongoing issue for people with rheumatic autoimmune diseases.
Learn to pace yourself, don't over do it and learn that stress is definitely not your friend.

The only thing I routinely do is ensure the bathroom and kitchen is fully cleaned everyday. I'm a clean freak, so would probably do this anyway.

I don't wear masks or do anything else out of the ordinary. I will avoid people outside of home if they have colds/flu. And do think twice about large crowds, but that's about it.

Interestingly enough, during lockdown 1, my youngest and OH caught Covid. I decided not to live any differently here and didn't catch it from them, which was a little odd. Consultant was pretty surprised too, but it goes to show, you really won't catch everything going.

Ya, I wouldn't worry too much. I'd make sure I get a bit of rest/nap, eat well, stay warm in winter etc. and carry on as normal. Get support where you can too to keep yourself in top form. I'm parenting with an autoimmune illness myself. Takes a bit of managing alright

I have RA and am on methotrexate. I’m a single mum to four school age kids. I don’t do anything differently and don’t seem to be ill any more or worse than before. I try and eat as healthily as I can - (the aim is lots of raw veg and fruit and as little processed food as possible along with plenty of water). And I try to exercise as much as possible- even if it’s just a little walk once a day. As pp have mentioned, my biggest issue is fatigue (aka utter exhaustion).

The biologics are meant to bring an overactive immune system down to more normal levels. In theory, it shouldn't matter too much. In reality, it's been hell here on one biologic and each illness was devastating and took months to clear, but not everyone reacts the same way. Some people (no idea about statistics) may find it doesn't make a lot of difference the way we did. Since changing meds things have been a lot better here.

I've had three different biologics now and with the first two, I ended up pretty ill.

The one I have now, just makes me exhausted, but they are pumping a fair bit in each time. The exhaustion does ease though.

@Bumblingonby i got diagnosed with RA when DS was 7m old. He went to nursery as I was so ill and couldn’t look after him safely.

I got hit harder by illnesses than DH would and we had the chickenpox vaccine for DS as soon as he could- someone told me that the NHS will now give it for free to protect you.

I can’t isolate from DS as he needs his mum, especially when sick. He caught scarlet fever in reception and I caught it too and was far more ill than him.

We ask people to tell us if they are ill so I can decide on the risks- in laws live abroad and are staying with MIL and a niece had norovirus so I stayed well clear but DH and DS met up with the well children in their garden. We can’t live in a bubble (and I don’t want to) but me going was an additional risk we didn’t need to take.

I’ve been far better and less likely to get ill since going in biologics which happened when DS was in reception, as my disease is now well controlled.