" Red like blood blisters " on side of and underneath tongue.

[Loopy-loo]

I have been having the above symptoms for two months or so! I now seem to have developed ulcer like lesions on the inside of my bottom lip! When the blood like blisters first appeared they were red, they now appear a lot darker. I am still devolving new tiny red blisters intermittently, my tonque is also completely white. I know people on this forum have posted these symptoms before and " Angina Bullosa Haemorrhagica " has been mentioned ??? Can these be a symptom of lupus ? As I have mentioned these symptoms to my Lupus Consultant by telephone, but he didn't seem to know what it could be other than ulcers ? To be fair to him I am in Cape Town at the moment so he isn't able to see what's actually happening orally. I have a date for my procedure of six extractions and six implants, which is 4th February, getting rather anxious now. But I know that I need to have the teeth extracted as I am in a considerable pain. I welcome your comments regarding the oral blood blisters.

[Julietsmombless2015]

My pcp says"he's pretty sure I have moderate lupus.I still am waiting to see my rheumatologist Feb 1st is my first appointment with him.I also have these weird ulcer like red blisters on the inside of my cheeks and inner lips where my bottom teeth are.And everything I eat that's mild like cinnamon,ketchup,odd things that are not hot, taste hot to me.I don't know what that is.I also have scaly patches on my face.I bought a spin brush toothbrush and used it on my face ,lol I know its weird ,to sand the dry patches away.It worked well then I used lotion to smooth out my skin.The patches still come back tho.I also have them on my arms and legs.

[Loopy-loo in reply to Julietsmombless2015]

I wish you well with your appointment on the 1st Febuary. We Lupies do seem to suffer from some weird and wonderful symptoms. lol Do update how you get on.

[MargaretGail]

I was diagnosed with Angina Bullosa Haemorrhagica in my early 20s (generally found in over 40s) but once I was diagnosed with SLE in my 50s the blood filled blisters were suddenly Lupus related and I had never had the other condition.

[Barnclown]

Hi loopy...sorry you're going through all this. I hope your oral surgery goes really well. The waiting is tough. But I think you're right to make sure your medics know about these symptoms

I've been coping with a version of oral blood blisters since my 20s...way before my infant onset lupus diagnosis was recovered & effective treatment begun 5 years ago in my mid 50s. I have posted on here at some length about this over the years (even a photo of the sort of big bad ones that affect my tongue - but they also happen on my inside cheeks & in gullet), so, instead of telling you the long story now, will search out links for you - and add them as a PS later.

Suffice it to say, that at first my dentist & dermatologist & eventually an NHS oral surgery clinic thought my blood blisters & the awful erosive ulcerous lesions they cause were due to Angina Bullosa Haemorrghagica. But once I was in treatment at my Lupus & Vasculitis clinic in 2011, rheumatology explained that in my case these bleeds are actually more due to my ehlers danlos type hypermobility which also causes tissue bleeds elsewhere in my body - especially regularly in my hands & feet. Where ever these tissue bleeds occur, I'm informed they are called Paroxysmal Haematomas. Of course, ED hypermobility involves connective tissue disorder. Plus my sjogrens is quite active...between this & my lupus, I do get plenty of oral inflammation + ulcers...and after the blood blister haematomas burst the lesions are erosive and very sore ulcerations which can take up to 4 weeks to heal. I rely on gengigel mouth wash & oral gel + prescription oral topical steroid paste (triamcinolone or kenalog in orabase)

🍀🍀🍀🍀😘 Coco

PS here is a link to a discussion & photo here on forum several months ago:

healthunlocked.com/lupusuk/...

here is a link to a great recent discussion on here:

healthunlocked.com/lupusuk/...

[GloomyEeyore]

I have been suffering oral blood blisters and ulcers for a long time now. Barnclown has posted a link to the discussion I started recently. I do hope that you get some help managing them as I know how unpleasant they are.

[Loopy-loo]

Thank you Margaret, Barnclown and GloomyEeyore ( love the name )

for your informative comments. It was the periodontist here in Cape Town that mentioned " Angina Bullosa Haemorrhagica " I was suffering from the oral blood blisters before I left the U.K. Everything seemed to start orally once I had had the root canal procedure, although prior to this I had been experiencing ear, jaw and throat pain.Long story short I was referred to a E.N.T. Consultant and after various tests nothing was found. My dentist then decided perhaps a certain tooth was causing this pain. Unfortunately having had this treatment everything orally has presented with my current problems. My dentist thought the blisters were medication related but referred me to a N.H.S. Oral Surgeon, as I was due to come to Cape Town that wasn't going to be an option as I was told the waiting list is long and it would be Febuary at the earliest. Hence me seeking treatment while I am here in Cape Town.I stopped medication and had bloods taken here but everything was fine regarding medication so resumed taking Methotrexate plus steroids. I feel a bit confused and wonder why my U.K. dentist hadn't perhaps thought of ( Angina Bullosa Haemorrhagica) ? His comments were to take Difflam mouth wash and wait for appointment with oral surgeon! or alternatively see someone in Cape Town. Must say I feel I am further forward being here than I would have been in the U.K. Apparently my ear, jawbone and throat pain is being caused because having no back teeth in my lower mouth has caused problems regarding my bite etc. Hence the pain I have been experiencing and hence why I am having my remaining six bottom teeth extracted and implants. Hopefully after everything has settled after surgery I will be mostly orally pain free. Just need to get a confirmation of diagnosis regarding the oral blood blisters

Barnclown thanks with regard to how you manage the symptoms. I presume that Genigigel mouth wash and oral gel is over the counter ? ( I will try the pharmacy here tomorrow ) The topical steroid paste I will either ask my local doctor here or e.mail the periodontist. Thanks to you all, you have been a great help.

[Barnclown in reply to Loopy-loo]

Am wishing you all the v best. Am so v grateful for all the detail you give us. These oral symptomatolo gives are very complex. And overlapping conditions seem to be common amongst oral paroxysmal haematoma sufferers.

After many years of having my symptoms investigated, I know how elusive diagnosis can be. According to my research + the NHS dermatologist & oral surgeons I've seen, definitive diagnosis of ABH is only via biopsy, which should be taken @ a particular stage of any haematoma...which the NHS has never managed for me because coordinating haematoma & clinc appt has been impossible. Yes, oral surgeons claimed that various elements in my blood test results (Ig anaemias) indicated ABH was a strong likelihood, but my reaction to that was: so what?!....because my medics & my research had indicated there is no special ABH treatment...you just treat your general condition inc any systemic illness & manage the inflammation of the lesion-healing stages...trying to avoid infection setting in etc. But, with even only the likelihood of ABH, my impression is that the vital thing is to ensure all your doctors know about your oral haematomas so they can be prepared for blood blisters in the back of the mouth & down throat during procedures (v dangerous)

My impression is that since adding daily mycophenolate & pred to my treatment plan a few years ago, I've had less oral paroxysmal haematomas. And those that occur are smaller...hmmmm🤔

Yes, I get gengigel products OTC, but the private periodontist I consulted last year (in exasperation after decades of being messed around by the NHS) said they can be prescribed. She is a v high powered consultant and, of all the oral specialists I've seen, she is the one who has helped me most. She finds gengigel is the best for therapeutic maintenance in sjogrens patients...and it helps me more than any product line I've tried eg corsodyl & biotene

I get triamcinolone or kenalog in orabase with the help of family in other countries because for some terrible reason these are no longer available in the uk (I did get this in prescription her for decades until a few years ago when it stopped being available: adcortyl in orabase was the trade name). Since then I started to arrange prescription from my uk GP which I send to my sister in the USA usually. Yes: if I were you, I'd ask your SA consultants about this & get tubes while you're there. But perhaps you're onto this already. Other sufferers use prescription steroid inhalers or sprays, and I guess this could be for you because your oral problems are so severe & widespread. I'll be v interested to learn about your therapeutic management when & if you feel like telling us more

Take care 🍀🍀🍀🍀