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Swollen Tongue no one knows why

Ear, Nose & Throat (ENT) | Last Active: Aug 18 11:35pm | Replies (44)

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@kasb

I've had persistent and recurrent angioedema since December 2021 (officially) but possibly back to June 2021 when my PCP started me on Lipitor. Since December the Angioedema has been present 100% of the time but maybe 70% of the time it's been intolerable. In retrospect we now know a lot of the issues I was having were due to a statin reaction. In December the Angioedema onset was over a few hours. Prior to that I didn't notice the swelling but looking back at pictures of me from the previous 6 months you can see the swelling was slowly growing. I was complaining of swollen/numb upper lip and my teeth hurt... all of them. It felt like they were free floating in head. Prednisone would help bring down the inflammation to a less painful level but never completely resolves it. We finally identified the Lipitor reaction as my kidney labs showed I was in failure (GFR - 14) and I developed Rhabdomyolysis. I was a train wreck. I still am.. The Rhabdo causes extreme muscle pain and will take 3-4 months post stopping the drug to hopefully completely resolve. From what I'm reading Angioedema can be drug induced and Statins is one of the drugs (along with NSAIDS, Ace inhibitors and a few others) and can continue to pop up after you discontinue the med. So I may have to sit in my bed for another 2 months to see if both the Rhabdo and the Angioedema resolve.

My Allergist tested C4 to rule out hereditary but other than that they have almost ignored it so once again I'm doing the research to figure out if the type of Angioedema can be identified and possible treatment options.
I put links to 2 good publications below.
There are multiple sub-types of Angioedema and some can be ruled out easily to narrow down etiology and treatment. I'm summarizing what I've read in these 2 links as well as multiple studies. I'm not a physician, but I am a nurse so I can sift through the medical terms easier. Even then, I still find Immunology hard to absorb.

Hereditary angioedema - Can be diagnosed with C4 and C1 inhibitor lab tests

Acute allergic angioedema - Usually presents WITH a rash or hives steroids and antihistamines will significantly improve.

Non-allergic drug reaction - Presents WITHOUT hives. Can be induced and Statins , NSAIDS, Ace inhibitors and a few others. Prednisone helps some with inflammation initially but does not resolve. We think this is what I have but I'm also on Xolair which suppresses hives and is working well. The diagnosis follows the Hereditary angioedema pathway except C4 is normal and C1 is abnormal. This is where my Allergist missed. He ordered the C4 but not the C1.

Acquired C1 inhibitor deficiency. - Like Drug Induced without the drug catalyst

Idiopathic angioedema - The left over bucket they cant figure out

Vibratory angioedema - Caused by repetitive vibrations like riding a motorcycle or using power tools that work with vibration.

Of thge 10,000 papers, studies and articles I've read, these 2 gave me a few tools to narrow down what the cause might be. Then maybe a treatment plan can evolve. I hope it helps you.
https://my.clevelandclinic.org/health/diseases/22632-angioedema
https://dermnetnz.org/topics/angioedema

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Replies to "I've had persistent and recurrent angioedema since December 2021 (officially) but possibly back to June 2021..."

My tongue gets swollen at times too, I bite my cheeks, my own tongue. So sorry you have this going on, I feel you frustration, hope there is an answer for you.