Anti c1q UV with Angioedema

[Janey513]

Just wondering if the few member with HUVS suffer with Angioedema and how they are treated?

I've just received my diagnosis recently and have been told that my Angioedema attacks need to be treated with IV hydrocortisone and c1 inhibitor (berinert).

Does anyone else use bradykinin or c1 inhibitor as part of their acute emergency treatment?

Thanks

Jane

[Sarahjh2004]

Hi Jane

I have a protocol in place with the ambulance service and A&E which is immediate chlorephenamin, hydrocortisone and ranitidine (all iv) for when I attack, which is at least a weekly occurrence.

It does the job and I always manage to get home which is a definite bonus.

My protocol is I am allowed up to 40mgs chlorephenamine, 400mgs hydrocortisone and 100mgs ranitidine. They are given over a specified time frame.

I hope this helps

Sarah

[Janey513 in reply to Sarahjh2004]

Thanks I'm still waiting for my emergency letter but luckily I work at UCLH so they just made a clinical judgement on the last admission.

I'm just curious as to what others use I'm so glad they have kept me on the C1 inhibitor but it's good to know what others use.

Does that resolve the swelling?

Struggling getting my head round a new reason for everything and I suppose worried that things I normally ignore might need treatment sooner.

Thanks for replying xx