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Ideopathic Angioedema - any advice/suggestions/tips/cures??

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PunishmentRoundupWithJoon · 06/01/2023 15:15

Posted a few days ago about my partner's chronic sinusitis and had some great, helpful responses so decided to try asking about another of his ailments! Namely, ideopathic andgioedema.

It was diagnosed many years ago after a viral infection and periodically, various parts of him will swell up. At times his tongue/throat has swelled and as you can imagine, this causes not a small degree of panic as breathing could potentially be affected. He always has a reserve of steroid tablets to take at the first sign of an episode and this usually keeps it to a manageable level.

He's gone for years with it not being a huge issue, only happening intermittently but of late, seems something is swelling up most days (it's so hard not to make an irreverant comment here...) - so much so that he made an appointment with an out of hours doctor. She only gave him 28 steroids which, if the angioedema continues like this, won't last long! She also said she wouldn't give him an epipen. She said it wouldn't work on his type of angioedema.

So, to my point. Does anyone suffer from this and can you offer any tips about anything that worked for you to calm it down/manage it more effectively? I realise it's a problem with the immune system and not necessarily caused by any outside forces. It could well be that, because of his recent truckload of antibiotics for his sinusitis, his immune system is fucked.

Any input gratefully received!

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