Hi, I have been diagnosed with lupus and I keep h... - LUPUS UK
Hi, I have been diagnosed with lupus and I keep having blood blisters on my tongue or in the cheeks of my mouth which can be very painful.
Hi I am sure that is a common side affect, I also have a very sore mouth, bleeding gums & oral thrush it is one of the tablets I am taking or the Methotrexate injections. I used to love spicy foods but now can't eat them cos of blisters & ulcers! What medication have you been prescribed?
I have been taking almost every medication including cyclophosphamide recently.
I have had this for almost 7 weeks now ,and have tried all sorts.
Doctor gave me Daktarin oral gel,which seems to be working.
You can also buy this over the counter,but be aware its the mouth one you need not the one for feet.
Thank you I will try this
Hello
I'm 58 and have had distinctive blood blister like lesions that turn into ulcers on my tongue, the inside of my cheeks etc since my early 20s. I've also had SLE since infancy but wasn't confirmed in uk until last year. My rheumy, my dermy & my dentist have not specifically said my blisters/ulcers are due to SLE. But I do have bleeds in other tissues.
Well, Several years ago my dermy diagnosed my mouth monsters (as I call them) to be angina bullosa haemorrhagica, but no biopsy has been taken to confirm the diagnosis (catching the lesions in time isn't something the NHS can manage really.
Anyway, of course I'm no expert, so can't venture an opinion on your version of these, but if it could be some thing like ABH, that might be worth maybe asking your rheumy/gp? Apparently ABH is quite unusual. Sometimes it is related to anaemia, but seems drs really don't know much about it. My theory is that mine is tied in with my sicca symptoms & my vasculitis.
Well, re management, , I've learned to let the blisters burst of their own accord, and I treat the inflamed ulcers that follow like we all treat mouth ulcers (there have been some good discussions here about this over the past year). Adcortyl in orabase was the greatest until they discontinued it last year...I'm on my last tube, praying it will be made again. Have tried literally everything else, and nothing works that well. The steroid in adcortyl was the important ingredient. My oral surgeon prescribed a steroid inhaler, but I haven't figured out how to use it for these things yet. Have been on plaquenil 400mg daily which hasn't seemed to made much diff to these blisters. Lilstumps question re your meds is a wise one.
Take care
Thanks for your reply. I too have had lupus as a child but was only diagnosed in 2006. I am now 60 yrs old, retired in 2007 because I was too ill.
The lupus has caused pulmonary fibrosis and vasculitis and all the other symptoms.
I am on oral steroid which has altered the shape of my face and has redirected the fat in my body to my belly.
My GP will be writing to my Rheumatologist regarding the blood blisters as each time I visit my consultant I keep forgetting to to discuss this problem.
I have only tried Bonjela this time and it really stung. I usually apply tooth paste to mouth ulcers and they would be gone the next day.
I am feeling very tired and not well today, I am wondering if this is why the blood blisters have appeared.
Hello again: you're totally welcome. I'll tell you, I wish we didn't have this stuff & our age in common, but it means a whole lot to me that we are in touch like this. Maybe I'm almost glad my NHS diagnosis took so long to turn up (maybe coping with all the secondary conditions individually has had its advantages) but I'm way beyond that now. Somehow, I cn't quite imagine your case is ABH: but what helped me get a diagnosis was taking a digital pic of one of the really big blood blisters. The drs keep telling me the ones in the roof of the mouth & throat are the clinchers re ABH diagnosis. SO far I don't get them.
Take care, hope you'll let me know how you get on.
Ps if you feel like private messaging, I'd be very grateful for info re how you cope ith your vasculitis. Eg do you get tissue bleeds in hands/ ankles/ feet, erythromelalgia and raynauds together etc? But no hard feelings if not - am imagining you need to save your energy and not feel up to more messaging!
