What is this now??? Lupus ? Or Sjogrens???

[winterbaby07]

What is this now??? Lupus ? Or Sjogrens??? This just appeared out of no where a few weeks ago (old pic)...

[MargaretGail]

Sorry if I seem excited but you are the first person in 30 years to show a photo of my blisters. They can be on the throat, cheek, tongue or lip. It's been called Angina bullosa Haemorrhagica (at the begining) but they finally settled on Lupus. Sometimes they are huge and take a fortnight to heal and sometimes tiny like the one you have shown. They usually appear during or after eating but without any obvious trauma.

[EOLHPC in reply to MargaretGail]

Gosh Margaret: I just posted my reply & up yours popped...so this makes 3 of us here....I have posted about these here before over the past 4 years...back then, my Drs were telling me this was Angina Bullosa Haemorrhagica, but now apparently my version of this is due to the combo of sjogrens + ehlers danios type hypermobility...I wouldn't wish these on anyone, but it's good to know I'm not alone! Mine happen any old time...I can feel them coming on...a sort of hot tingling

[seasider18 in reply to MargaretGail]

I've had a Angina bullosa haemorrhagica on my tongue for years. I did go to the Maxillofacial unit who said that they would remove it. As I have a very bad gag reaction I chickened out. The consultant said that he would too, I have been on warfarin for the past year and a half and I'm concerned as it has suddenly grown a lot bigger and wonder if it would stop bleeding if it burst.

[MargaretGail in reply to seasider18]

I've never had one that stayed, they have always burst on their own or if they were really big I was advised to lance them myself. So this is new to me 🤔

[seasider18 in reply to MargaretGail]

How much did they bleed ? Being on Warfarin it would be difficult to put pressure on to stop it. I got a relatively small cut on a finger that would not stop after 9 hours and ended up at A&E on a Saturday night with a 7 hour wait after the triage nurse just did a partial dressing while I waited for the doctor.

[MargaretGail in reply to seasider18]

It really depends on the size, mine don't continue to bleed they just empty but im not on warfarin

[seasider18 in reply to MargaretGail]

I'm getting a device implanted in my heart to stop clots from getting out of my left atrial appendage in a couple of weeks. After that I can stop warfarin. Perhaps I'll pop it then.

The Maxillofacial unit were going to cut it out and stich it.

[MargaretGail in reply to seasider18]

It must be a deep one is It?

[seasider18 in reply to MargaretGail]

I guess it is.

[EOLHPC]

Hello winter baby.

This new photo shows what I think I s a v small example of the blood blister-like paroxysmal haematomas that I was describing to you yesterday in my long reply to your post with your great roof of mouth lesion. There are all sorts of theories about why these happen...they often occur along the "bite line" on the inside of the cheeks where your teeth meet together....some of us get them on our tongues, especially along the edges...and some of us get them at the back of the throat. In many people they are painless. Mine are v painful both at the haematomas stage & when they burst to become lesions (similar to ulcers).

I've been managing these since my early 20s....and have some good photos (as I said, mine are much larger). I'll see if I can figure out how to post a photo

[MargaretGail]

Hi Barnclown, I've only been using this site about 18 months so I've missed your previous posts. Interestingly I also have Sjogrens and hypermobile joints. When I last saw a specialist about the blisters (his opinion because he had never seen it before) was that it was a connective tissue disorder because the blood vessels were bursting under external pressure.

[EOLHPC in reply to MargaretGail]

You did vvvvv well to find a medic who had so much insight! It took me decades to even mention these...I had so many multi system probs which I was being told were all normal but no medic was taking an overview and realising it wasn't normal to have that much wrong with me all over my bod. In 2019, finally, I was referred to rheumatology because my sjogrens + raynauds & erythromelalgia

+ ehlers danlos type hypermobility symptoms got so bad...only then were these conditions diagnosed & soon after my lupus too.

Several years before all that, I took my first digital photo, showed it to my dentist & told him the history of my version of these oral paroxysmal haematomas (I called them blood blisters back then). He referred me to dermatology, where the angina bullosa haemorrhagica was diagnosed. In the years that followed, I got even more of these more frequently, and was referred to the oral surgery clinic where I was treated abysmally....that's another tale

Am so glad to meet you here Margaret...and I wish you all the vvvv best managing these...I've been told it's vital to warn anaesthtists about them because of the possibility they can occur during ops etc

I've just posted a pic on here...horrible things...don't much like sharing this pic, but maybe it'll help others

[MargaretGail in reply to EOLHPC]

Tell me about it, I had an endoscopy last week and came out black and blue with a blister in my throat! Ah it's interesting to be different

[EOLHPC in reply to MargaretGail]

Dreadful, isn't it 😳...but after a while we more or less get used to these things.....How do your medics react when you warn them about these...eg before your endoscopy?😉

[MargaretGail in reply to EOLHPC]

Mixed reactions really, it depends on their level of knowledge and experience.

[LesJames]

Yep, Exactly the same as mine which also includes my tongue. Still have no confirmation as to what they are. My imagination!!!!

[LesJames]

PS I do have Sjogren's and APS

[EOLHPC in reply to LesJames]

Hi les: Do you also get these paroxysmal haematomas elsewhere, e.g. inside the tissues of your bod...especially lower legs, ankles, feet, inc toes, wrists, hands inc fingers....these are like deep bleeds & create what looks like bruising, but isn't that simple. I think my version of this sort of thing is related to my oral haematomas...and also to blood pooling in the extremities + orthostatic intolerance (the sort of thing that I understand can be experienced with APS...which I don't yet seem to be diagnosed with).

Possibly the worst aspect of my version of this vascular weakness was the early onset (pardon me) severe prolapsed bleeding piles that happened to me for no reason at all in my teens...horrific....eventually in my 30s the NHS have me a big haemorrhoidectomy....which helped but, as is so often the case, caused other ongoing probs. now my medics say this is a symptom of my version of ehlers danlos is type hypermobility.

[LesJames in reply to EOLHPC]

Hi Barn Clown, Yes! I do get these elsewhere. It is difficult to distinguish sometimes because of the bruising I often get. This is thought to be because of my Warfarin and INR range of between 3-4.

[EOLHPC in reply to LesJames]

Hmmm, v interesting. Well, as with so many symptoms, there can be various causes etc...and I'm not on warfarin...so, am not jumping to any conclusions...just trying to keep my eyes wide open: thanks! (Will now Google INR)

[EOLHPC]

Hello again winterbaby....just want to thank you for your 2 photos & posts and for getting these great discussions going. I hope all this is helping you...it's helping me a lot, so am v grateful to you & everyone who is replying. I was v upset by these oral nasties when they started up in my 20s...but am in my 60s now and have learned to manage this stuff through trial & error with reasonable success...which has been a v lonely, isolated process....but meanwhile I've learned to feel less alarmed by this stuff.

Thank goodness for this great forum...the sharing, solidarity & sound advice makes all the diff

Take care🍀🌻

PS I've just posted a pic of one of my oral paroxysmal haematomas on here ...this one is on my tongue, but I get the same thing elsewhere in my mouth e.g. Inside my cheeks, the same sort of place as the bleed in your photo here

[GloomyEeyore]

I get blood blisters like these on a regular basis. I also have mouth ulcers almost continuously along with really painful cracking at the corners of my mouth. Ulcers have appeared in my nose, throat and intimate areas too. I also experience petechiae, groups of small purple spots which I'm told is bleeding into the skin. At the moment I am only diagnosed with connective tissue disease. My rheumatologist believes I have seronegative lupus but isn't committing himself just yet. Next appointment is on November.

[Tubamags]

My goodness! I have been getting these for years and have never connected them to any of my conditions. I do get a similar thing on my finger and toe joints, a little blood blister then bursts with no prior trauma. Very painful. The ones in my mouth aren't painful unless they burst, then the sore spot takes days or longer to get better.

I haven't been diagnosed with lupus yet, so is this another symptom I should be adding to my ever growing list? I am saving to see a private consultant as the NHS don't seem to be interested in spite of my symptoms pointing that way. "Its your age dear!"!!!!

Maggie

[winterbaby07 in reply to Tubamags]

Hello Tubamags I am not sure. But I think it's a Sjogrens thing??? Thanks for replying. This is a battle I tell ya!!!

[beyondthepale]

I posted here, I have a similar problem, if someone could help, I would be grateful, if not, at least you know there is another sufferer out there. healthunlocked.com/lupusuk/...

[great2feel58]

It could be some type of food allergies