Looking to contact others with angio oedema/ oedema of the face and find out what has worked for you

[Cobolt]

Hi

I was diagnosed with angio edema and pollen food allergies in late 2020. Treatment with antihistamines hasnt worked snd new consultant has added in montelukast. He thinks it might not be angio edema ..Unfortunately the new drug is upsetting my stomach… I react to a raft of things , have a very limited diet and am looking to find out how others have managed these conditions sucessfully

[Cobolt]

Should have added that I have low grade aathma, am very allergic to a raft ofthings and have ended up here because of the monteklust

[Poobah]

I always take Montelukast after my evening meal as it's easier on the stomach. If you still have stomach problems despite taking with food then tell your prescribing doctor.

Angioedema can be caused by an allergy including aspirin or NSAIDs (ibuprofen etc) sensitivity. It's not uncommon for asthmatics to develop an aspirin sensitivity in adulthood. Mind you it could be any allergy and pinpointing whatever is your trigger may be a long process. If it is linked to aspirin then a diet low in omega 6 can help (there's a relation between the two).

[Cobolt in reply to Poobah]

Thanks Poobah. Can I ask if you take it immediately after your evening meal? I’ve been taking it about 2-3 hours afterwards but could easily bring it foward. Thanks

cobalt.

[Poobah in reply to Cobolt]

Yes, I take directly after my evening meal. I hope that helps.

[Cobolt in reply to Poobah]

Thanks . I have changed how I take it and am hoping it will help.

[floating_]

I'm on Xolair and it helps keep me stable (I'm also on a whole load of other things). I rarely have full angioedema nowadays, still have hives though. Greatly helped my asthma become stable too, been out of hospital since January now (was only in due to pneumonia basically) before that was in September ish time was my last admission.

I do have severe MCAS in addition to severe asthma though, so ymmv.

[Cobolt in reply to floating_]

Thanks floating. Good to know there are meds that work. My consultant says that mcas is one of the things he is going to test for if this doesn't work.

[floating_ in reply to Cobolt]

Let me know if you have any questions about it or the treatment or whatever! Open to giving you support. Good luck!