Immunosuppressant Tips

[Danioo]

DH is due to start immunosuppressants in the next few weeks, he already catches everything going and has ended up in hospital twice recently, any tips on helping to keep him well?

As a family did you do anything differently, mix indoors less with other people etc? How far to go with it?

Thinking to increase his vitamins, use first defence, remind people not to come round if they are unwell, increase hand hygiene...

I'm just imagining him getting ill constantly but is it not really like that? The increased cancer risk is making me worry too.

I found when I started immunosuppressants that I actually got less ill; I spoke to my consultant and he said that it wasn't unheard of because my immune system was much calmer and better regulated. I've been on a couple of different ones over the last 10 years and have never done anything differently and I have a 3 year old at nursery so am exposed to pretty much everything! They have, however, given me such an improved quality of life.

I've been on immunosuppressants for 2 years now. I've stayed really well. Haven't even caught a cold this winter while everyone around me has had flu, strep throat, sickness bugs. I did catch covid last Easter which wiped me out for a month but I didn't need hospital treatment.

Try not to worry.

Thank you both, that's really reassuring to read.

I am much healthier on immunosuppressants than off them. I'm well monitored so know when I'm vulnerable (hardly ever) and my immune reaction to minor infections is much more normal. When I'm off them, my body doesn't know when to stop fighting, so I felt ill for much longer every time I caught anything.

If he's vulnerable, they'll adjust his medication and they have lots of options, you don't just live with the side effects, you watch for them and fix them.

Good luck to your DH, they can be life changing drugs and we're so lucky to live at a time when there are so many options.

Household member is severely immune suppressed - and probably less frequently ill since being on treatment

Things that become second nature - asking people with symptoms (of anything) not to come to our house, asking people we're meeting elsewhere to let us know if they are ill, wearing masks on the bus and when attending hospital, doing their errands (so they don't have to hang around indoor places unnecessarily, esp in winter virus season), asking school to seat them in the best ventilated part of a classroom, ideally at back by an open window, and generally campaigning for schools to be safer esp better ventilation, being glad when they choose outdoor hobbies!

Been on immunosuppressants since I was 19 am now nearly 37. Best tip I can give is keep a thermometer on hand. I’ve gotten very run down in the last month and have bounced from one infection to another but this has been very unusual for me. Always have my flu jab and do what I can to steer clear of folks obviously ill. I keep a stock of cold/flu meds in at all times too. After that, live your lives, don’t let it take over.

Thank you, good advice and also so good to read that generally people seem to be less ill. I feel much less worried now, sounds like what I was worrying about doesn't really happen. Just need to be sensible.

We're so excited about the upcoming year, the hospital have said this will be life changing for him.

I remember being terrified by the nurse who came to give me the injections; he basically said that if I got a cold, it was likely to turn into pneumonia and I should avoid any undercooked meat etc. I asked my consultant about it and he was very reassuring and basically told me to live as normal and eat all the rare steaks I wanted!

My dd is taking immune suppressants for severe eczema. She's been on them three years now with no problems. Changed her life. We make sure she takes her folic acid and multi vitamin, yearly flu jab, good diet etc and we've had no bad illness. Could be because she actually takes the suppressants to calm her immune system down to normal levels rather than it attacking her skin. Best of luck x

The increased cancer risk from the meds is pretty balanced by the increased cancer risk from the batshit immune system if left to get on with things unmedicated - and, to me, I needed something resembling a life for a change.