Vasculitis UK
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Flu vaccines and whether to get them

Normally flu vaccines are recommended for people on immunosupressive drugs. I've had many annual flu vaccines since being diagnosed with cerebral vasculitis in 1997. But now I can't have them, under consultant's orders. It's partly because I'm on a huge cocktail of immunosuppression drugs (now 4 immunosuppressive drugs simultaneously, and also steroids on top) so would have no hope of getting a protective immune response from the vaccine. But it's also because a few years ago the flu vaccine seems to have exacerbated my very aggressive cerebral vasculitis. We'd just got it under control again, with difficulty, then a week after my annual flu vaccine it was off again, probably triggered by my immune system's response to the vaccine (I was on far fewer immunosuppressive drugs then).

So no flu vaccines for me any more. But my husband gets a flu vaccine every year. This is allowed because he is my carer, and needs to be fit to look after me. But it also has the advantage that it protects him from getting the flu, and therefore also by extension me from catching it from him, which is particularly good since I can't get vaccine protection myself. Since I'm mostly housebound the only person I'm likely to catch flu from is my husband, so if he doesn't catch the bug in the first place ...

This year he seems to have had flu even before the vaccine season, and has been off work a lot over the last fortnight, with a flu-like infection that wouldn't go away in a hurry. He's now at the washed-out weak stage, but recovering. And I didn't catch it from him. But I rarely catch bugs from him. Despite all the massive cytotoxic drugs I'm on I still have a high white blood cell count, and seem to fare very well with opportunistic infections. Long may it continue.

Obviously each case is different. My case of being on 4 immunosuppressive drugs at once (Methotrexate, Mycophenolate Mofetil, Azathioprine and Thalidomide) and steroids as well is very unusual. People on lower cocktails are likely to get better protection from the flu vaccine. Talk to your GP and consultant for the best advice in your case on whether to get the vaccine. Normally I think it would be recommended, especially for people with additional risk factors such as lung issues.

3 Replies

An excellent article Vivian & thanks for sharing. I'm on no regular immunosuppression apart from an annual dose of Rituxumab and Dr David Jayne at Addenbrooke's suggested I get the regular flu vaccines with at least 6 weeks between the Ritux.


Hi Viv, has Susan been seeing your husband?? She too has been laid very low for the past 3 days with a flu type bug! Selfishly, I'm crossing my fingers that my compromised immune system will still be able to stop me getting it. Surprisingly, I've been remarkably free from infections in the 10 years since starting the meds - I'm still on full dose mycophenelate. My only serious "do" was contracting campylobacter from a chicken salad in Cambodia on the last day of our holiday, about 9 years ago. The 18 hour journey home seemed very,very long to me!

I was a dentist in practice and went back to work whilst still in the induction phase of treatment. Not very sensible really, as the dental surgery environment is full of bacterial aerosols. I carried on working for another 5 years until I retired at 63. I've never hads the 'flu jab, but I will henceforth! David Jayne recommends it for most people with vasculitis taking immune-suppressing drugs.

When I hear and read people's vasculitis stories, there seems to be a common theme, that most of them were generally very healthy until the vasculitis struck, and that most of them, despite their problems, have a good sense of humour. Read into that what you will.


Thank you for that article Vivian. I have only had flu once in my lifetime, once was enough. Have only had the flu jab once and it made me ill. This was many years ago and long before I got Vasculitis so will speak to my consultant when I go to nephrology clinic as I'd rather not have the jab if I can do without it.

Thanks again

Jacqui x


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