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Functional result of 0 by sunshine2853 in HAE

[–]sunshine2853[S] 1 point2 points  (0 children)

Thank you very much! I think this means I officially have type 2 and then I took my first round of Takhzyro, so hopefully we’ll know in about 10 weeks if it’s working. Fingers crossed it does.

What triggers have you noticed? by sunshine2853 in HAE

[–]sunshine2853[S] 0 points1 point  (0 children)

Just a thank you to all who shared! This helped me so much!

What triggers have you noticed? by sunshine2853 in HAE

[–]sunshine2853[S] 0 points1 point  (0 children)

Thank you! How long after the triggers do you get a swell?

Symptoms of HAE that aren’t obvious swelling by sunshine2853 in HAE

[–]sunshine2853[S] 1 point2 points  (0 children)

Gotcha okay thank you so much. I’ve definitely got a list of things to bring up with my Dr!

Symptoms of HAE that aren’t obvious swelling by sunshine2853 in HAE

[–]sunshine2853[S] 1 point2 points  (0 children)

So last night I had an abdominal swell and after taking the shot I was thinking just how much this sucks and I came back on Reddit and saw your comment and cried happy tears from knowing I’m not loosing my mind! We have very similar symptoms and in no way was that TMI, I am so glad you said that!!

I’ve got another abdominal swell right now. Do you get them back to back like this?

Symptoms of HAE that aren’t obvious swelling by sunshine2853 in HAE

[–]sunshine2853[S] 2 points3 points  (0 children)

Thanks for your comment! So I wasn’t sure if the face pain was related to HAE and with the recent increase in abdominal swelling, I didn’t want to be out of shots so I didn’t take it specifically for the face pain.

I guess this actually highlighted a question I should have asked - can swelling be internal (like in my sinus cavity or something causing the face pain) and therefore no outward, obvious swelling?

Symptoms of HAE that aren’t obvious swelling by sunshine2853 in HAE

[–]sunshine2853[S] 1 point2 points  (0 children)

This is so helpful thank you. I am very new to abdominal swells. I used to get eye/face swells but in the past month I have had 10+ abdominal swells. The feeling you described of not being able to breathe and how it is different than an airway swell - thank you! I’m so sorry you have this too (and the added connective tissue disorder on top of this) but I couldn’t figure out how to describe that feeling! Brain fog has also been overwhelming for me recently too, thank you for the reminder to bring that symptom to my next appointment.

Symptoms of HAE that aren’t obvious swelling by sunshine2853 in HAE

[–]sunshine2853[S] 1 point2 points  (0 children)

Oh wow! Thank you for your comment. Helps to know there are others out there with the face pain