The Australian Sjögren's Syndrome Association
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Anyone: have you been diagnosed with Achenbach syndrome (paroxysmal haematoma of fingers (& toes)) or Ehlers Danlos?

Does anyone also have what I've been calling "tissue bleeds" in their fingers & toes. I'm 60 and have experienced these since my 20s, and the bleeds have become more frequent and large over the past 4-5 years. Basically, they don't start due to injury or friction necessarily. At first there is redness, swelling and burning pain, then the deep bleed is red & blue, leaving a deep area of purple. The symptoms can cover a small area of tissue, say 1cm square, or a larger area. These bleeds happen several times a month, fade away over 3-4 days, and seem more frequent when I start dropping my pred dose during a taper.

I am diagnosed with systemic lupus, sicca syndrome, Angina bullosa haemorrhagica, simultaneous raynauds & erythromelalgia, global hypermobility etc etc. my SLE diagnosis was made when I was an infant & teen, but I wasn't told. So I've spent my life untreated except for at health crises. My SLE was re diagnosed in 2010, and I m responding well to treatment, although progressive damage from lack of treatment exists especially in my vascular & nervous system tissues. But this damage is not considered severe.

At my regular rheumatology clinic in late oct the registrar said she thinks my tissue bleeds are either Achenbach or Ehlers Danlos (hypermobility syndrome). She says the SLE treatment plan I'm on is appropriate (plaquenil, Amitriptyline, pred tapers & about to start mycophenolate + all my 'holes' have treatment plans which are more or less effective (eyes, mouth, nose, undercarriage (sorry)) and no extra treatment for my bleeds is necessary because there is nothing serious underlying these bleeds. Phew! This is a relief: there is a concern that I could be developing vasculitis.

So, i'm left wondering: does anyone here have these sort of tissue bleeds? Perhaps the terms my rheumy is using to cover these bleeds will ring a bell: has anyone here been diagnosed with Achenbach Syndrome ((paroxysmal haematomas of fingers (& toes)) or Ehlers Danlos?

If the reply is yes to these ?s, how frequent are your bleeds & how do you manage them? And are you on similar treatment plans to me?

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