Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Symptoms >> Clear blisters lips and mouth http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1421320018 Message started by Anaphylaxing on 01/14/15 at 23:06:58

Title: Clear blisters lips and mouth
Post by Anaphylaxing on 01/14/15 at 23:06:58

Anyone else get these with reactions?

Title: Re: Clear blisters lips and mouth
Post by Lisa on 01/19/15 at 12:21:02

I´m thinking Lichen planos - bulhosa?

I have a stomatologist who has suspected this with me when I began having mysterious inflammation and a few blisters and ulcers but he couldn´t pin it down and he´s still keeping me under investigation. He´s sure it´s the masto in some aspect or other.

See if you can find a stomatologist to take a look at this. It´s worth the hunt!!!

I hope that helps.

Lisa

Title: Re: Clear blisters lips and mouth
Post by Anaphylaxing on 01/19/15 at 13:37:37

They're thinking Stevens Johnson Syndrome spectrum with anaphylaxis. After that I had an HSV or HZV outbreak with all of these weird ulcers.

I've often got a random bilster or ulcer here or there with reactions, but this one was sudden blisters all over my mouth and throat with anaphylaxis. Scary!

Thanks mast cells for another fun, scary symptom!

Hope you're feeling well these days Lisa.

8-) 8-) :D :D

Title: Re: Clear blisters lips and mouth
Post by Spartako on 01/19/15 at 21:17:29

You mean blisters like that? http://en.wikipedia.org/wiki/Aphthous_stomatitis

When I suffer from strong mast cell activation I sometimes get these. The mast cell mediator TNF-α seems to be the cause of this.

Title: Re: Clear blisters lips and mouth
Post by Anaphylaxing on 01/19/15 at 22:28:18

no but I get those too usually with a herpes outbreak. I'd describe those as an apthous ulcer

mine were elevated and clear more bullous and sudden/acute but transient

thanks!

Title: Re: Clear blisters lips and mouth
Post by Lisa on 01/20/15 at 14:19:06

I don´t know, sounds like lichen planos bulhosa to me. It can do this and it´s autoimmune related. This is what made me think of it.

Whatever it is, I´m sorry for the issues!!

Get them to get a biopsy and run it through the immunohistochemical for masto!! Lets SEE what´s going on there!!!

Kisses!

Title: Re: Clear blisters lips and mouth
Post by Anaphylaxing on 01/20/15 at 18:40:15

They were transient and acute, so not possible to biopsy. The mast cell expert was consulted and did not recommend any work up just to avoid the offending drug. Very pleased they're gone at least :)

My vague understanding of lichen planus bullosa is that it lasts longer than minutes and not generally associated with an anaphylactic reaction and can rarely be premalignant. It would be in the differential diagnosis for a drug reaction or Steven Johnson. But I'm sure they all have some overlap.

I'm so sorry that you have it and I hope it goes away soon! Take good care

Title: Re: Clear blisters lips and mouth
Post by Lisa on 01/23/15 at 07:17:29

See, that´s just it, I don´t iit! My stomatologist has been investigating this for 2 years now and it´s slowly gotten better and only shows up every blue moon. He´s a bit of a geek and knows autoimmune diseases that affect the mouth quite well and said he´s never seen the likes of this. We suspect that the activity was triggered by the acute and sever case of stomatitis I had in 2011 but when I finally realized I needed to see an oral surgeon to figure this out I was already 9 months later and the sporadic inflamation and sores were beginning to taper off. After that the situtuation was that it was never in a good spot to biopsy.

What it reminds me of is the MC hyperplasias I´ve had happen. SM is known to do and it´s a definite quirky finding in my case and I told this doctor about this fact about masto and he said, yes, this sounds plausable. But this was the thing, I would get a point of redness, inflammation, and pain and within 2 or 3 days was gone with NO TRACES! He was always so amazed because as you know there should have been some residual evidence and the sloughing off of the damaged tissues, but there wasn´t, it would leave NO TRACES of ever having had serious inflammation present, yet another finger pointing to an MC hyperplasia because it´s not real inflammation, it´s just a focal point of normal MCs.

But I´m glad you´re not having any more issues and you´ve found the culpret! that´s great!!

I hope you are well otherwise and not suffering as much as you had been when you first began your journey!!!!

Many hugs!

Lisa

Title: Re: Clear blisters lips and mouth
Post by Anaphylaxing on 02/01/15 at 20:41:50

Oh gosh Lisa that sounds very difficult. I hope you figure it out and it stays away.

MCAS wise I'm doing so much better, thank you. i'm off daily meds and just use them for premedication and reactions. still have to avoid a lot of triggers but the number is decreasing. Thanks for all of your help and support in the beginning.

However the tooth I just had pulled has still left a simmering infection in my jaw, so I'm seeing an oral surgeon too :S They wanted to wait to see if my body would fight it and let my system settle after the SJS but it hasn't behaved yet. Hopefully we will sort it out soon!!

I also hope you are otherwise in good health after all you've been through and go through.Take good care.