Angioedema and CLL: I think I figure out my... - CLL Support

CLL Support

23,088 members39,648 posts

Angioedema and CLL

pragnar profile image
4 Replies

I think I figure out my difficulty breathing. After having several tests and nothing showed I woke up last few days with swollen lips. That made me remember all this strange symptoms I had before my chemotherapy 4 years ago. Any thoughts on Angioedema and CLL.

Written by
pragnar profile image
pragnar
To view profiles and participate in discussions please or .
Read more about...
4 Replies
cllady01 profile image
cllady01Former Volunteer

Pragnar, if you have had angioedema before, was there something designated as the cause? Of course, you need to see a Dr. to get this sorted and the swelling should help you now get at the problem when the tests done did not.

You may have read the following, and I do not recommend self-diagnosis (but, it is your body and you have the clue to present to the Dr. for possible confirmation.)

This NHS rundown of angioedema does say one cause can be a lymphatic disease in rare occasions can be a factor.

Please get to a Dr. and the following list may be helpful in the sorting:

nhs.uk/conditions/angioedem...

Let us know--I hope you breathing has gotten better and not worse.

pragnar profile image
pragnar in reply to cllady01

Thank you. Before chemotherapy I had plenty of things happening, swelling, hives, breathing problems, fatigue. Had tons of testing done but nothing concrete. Doctors suspected Angioedema. Everything stopped after chemo. I started Imbruvica last November and stopped 3 months ago for side effects. I just restarted Imbruvica last week as my blood count is rising. I had started breathing problems about 3 week ago. Thought it was CLL but now I think it was Angioedema. Not sure how they are related but there seem to connection.

cllady01 profile image
cllady01Former Volunteer in reply to pragnar

See your Dr. and tell him/her what you have said here. You system is reacting to something you are allergic to.

Shedman profile image
Shedman

Hi Pragnar. Sorry to read of the angioedema. Are you an allergic type? - any known allergies?

By the way, it might be helpful to respondents if your profile is updated with age and country - but I read your first post and arrive at 59 yrs old.

You say that recent blood tests showed 'nothing'

Seems to me that blood tests always show something, even if it is just varying kidney function values (rare for these to remain perfect as we get older, and SLL/CLL may affect the kidney function too) and some aspects related to inflammation levels. Maybe some are on the low side of the 'normal' range.

Have you been advised to take antihistamines?

Not what you're looking for?

You may also like...

CLL and Genetics....

The last time I wrote on this site, I had just been diagnosed with CLL, lost my job and insurance...

CLL and Hives

Recently diagnosed and feeling the fear. I thought I was a healthy 40 yr old. But last year started...

Statins and CLL.

I am new to this forum. I Was diagnosed early Jan 2020 with CLL stage A, watch and wait. Next blood...

Work and CLL

I was diagnosed with CLL in 2020. I’m stage 1 watch & wait my markers are mutated trisomy 12 with...

CLL and Thyroid

Good morning. I was diagnosed with hypothyroidism a few years before CLL and have been taking...