Angina Haemorrhagica Bullosa?

[beyondthepale]

I have never been tested for Lupus or Sjogrens. Only Pemphigus (Negative). I get massive blood blisters in mouth and throat, obstructing airway. I can no longer eat any solid food. The slightest knock on my forearms gives me deep red weals and blood blisters. I am 56. I have fibromyalgia, hemidiaphragmatic paralysis, gross displacement of the abdominal organs, gastric volvulus, silent reflux, laryngospasms, asthma, painful joints and muscular pain. I used to be so fit. I can endure all of this, but the lack of concern over the blood blisters leaves me utterly depressed. No one gives a damn. The ones in the throat are worst. I gag and retch til they burst, only then is the airway cleared, but the pain is awful for weeks afterwards. I daren't eat anything which isn't pureed. Even a sesame seed can set this off. I'm permanently iron deficient due to Omeprazole and bleeding from these injuries. Intubation is damn near impossible because it damages my tissues even more. I am at my wits end. Doctors just do not seem to care. These are the ones you CAN see. I cannot photograph inside my throat. How do you get a GP to take you seriously? They've seen these things and still they don't understand how distressing it is. Thankyou for reading. I hope someone can point me in the right direction, and if anyone else is going through this, you are not alone.

[MargaretGail]

Hello Beyondthepale, I was diagnosed with Angina Bullous Haemorrhagica in my 20s. As you say they are dreadful painful blisters which can block your throat no problem. I'd had them for 20 years before I was diagnosed with Cutaneous Lupus and a few more years later SLE. Once I started taking Hydroxy chloroquine sulphate the blisters dramatically reduced in size, number and frequency. I still get them (I'm 56) but they are no where near as bad as they were. X

[beyondthepale in reply to MargaretGail]

Thankyou Margaret. So sorry to hear you are also going through this, but encouraged because you have found some answers. I will take on board everything you have said and put it to the GP. I think it will be a battle, but I can't go on like this.

[EOLHPC]

hello beyondthepale and welcome

am sorry you're managing all this awful stuff....just ABH alone is truly miserable. and living with everything you are is made even more of a trial due to most medics having little of experience of these sort of things. I'm dismayed by your GP's reaction

i'm similar to margaretgail: am 62 and my ABH started in my early 20s. i have photos like yours: took me some time to figure out how to get these pics inside my mouth etc...i think your pics are excellent

for years, i thought these 'blood blisters' were 'normal' but as time passed they got bigger & bigger + the lesions after the blood blisters burst became so huge, erosive and sore that my dentist prescribed me topical oral steroid to treat them. eventually when i was 54, my dentist sent photos to a local NHS dermatologist who diagnosed ABH. meanwhile, my GP referred me to NHS oral surgery where they messed around with blood tests and basically told me to sod off.

my breakthrough came in 2011 when i was diagnosed with lupus (SLE) which predisposes me to dreadful oral lesions...and it turned out my lupus was actually infant onset, + it turned out that i also have the connective tissue disorder vascular ehlers danlos syndrome (EDS) which predisposes me to all sorts of bleeds anywhere, and especially orally, + prolapsing veins inside my bod & outside etc, and that my VEDS is implicated in my version of ABH

5+ years ago when i began systemic treatment with prescription meds for lupus, my version of ABH did seem to slightly damp down, but i still get these horrid blood blisters & lesions. now i see a periodontist who has got me using gengigel mouth wash + oral gel, as well as the prescription topical steroids...and i sort of feel as if i'm better managing to somewhat minimise the horror of living with my predisposition to these things. Certainly my version of complex oral problems became even more understandable when my medics realised my Sjögren's syndrome (SS) is currently even more active than my SLE (you may know that SS is another autoimmune condition)

have you been assessed re any forms of lupus, sjogrens &/or EDS? How do your consultants account for your many mutisystem issues? Have you asked them whether immune dysfunction or connective tissue disorder could be underlying your probs?

if you do ask for referral to a dermatology or rheumatology clinic for lupus assessment, it would be best to go to a dept with special expertise in immune dysfunction & connective tissue disorders....maybe message Paul_Howard here: he works for Lupus UK and can try to help you find a clinic near you

also, it might be worth posting your question & pics on the HealthUnlocked Ehlers-Danlos Support UK community forum...if you haven't done so already

wishing you every possible ounce of good luck with this

🍀🍀🍀🍀 coco

[beyondthepale in reply to EOLHPC]

Thankyou Barnclown. I have had no referrals or tests for lupus, EDS or anything else. The only test I had was for Pemphigus Vulgarus which came back negative. Like you, I managed to get my dentist to refer me to the oral clinic and the consultant took a look at my mouth, saw two small blisters and said "live with it, go away". The throat blisters are terrifying. They just don't get it. It feels like a histamine reaction. I get the pain, then my whole throat closes up until the blister bursts. If the pain reaction is still ongoing, the blister will refill until the reaction, whatever it is, subsides, then the swelling slowly subsides. I get dark red lesions on my forearms without even knowing how I get them. The slightest knock, and they look like the arms of a 90 year old with a falling down problem. Thankyou for your insight. I am going to get an appointment tomorrow and do my nut, taking the photos and so on. It doesn't help that I moved to a different part of the country, and the GP I had lost his contract. All we have is locums who know nothing about the patients.

[EOLHPC in reply to beyondthepale]

Courage....hang in there: you are so right: insist they investigate & provide a convincing explanation. If one clinic is unhelpful: insist on referral for another opinion. Hope you'll let us know how you get on 🍀🍀🍀🍀