Scleroderma & Raynaud's UK (SRUK)
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Anyone: have you been diagnosed with Achenbach syndrome (paroxysmal haematoma of fingers (& toes)) or Ehlers Danlos?

In September I posted a ? asking if anyone has what I called "tissue bleeds" in their fingers & toes, and I described my version of these. 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, which fades over 3-4 days. The symptoms can cover a small area of tissue, say 1cm square, or a larger area. These bleeds happen several times a month, and seem more frequent when I start dropping my pred dose during a taper (I have SLE, sicca syndrome/ sjogrens, simultaneous RP & EM, global hypermobility etc etc).

At my regular rheumatology clinic in late oct the registrar said she thinks these bleeds are either Achenbach or Ehlers Danlos (an aspect hypermobility syndrome). She says the SLE treatment plan I'm on (plaquenil, Amitriptyline, pred tapers & about to start mycophenolate) is appropriate, 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, aside from the very few people who replied to my ? In sept, i'm left wondering: does anyone else here have these sort of tissue bleeds? Perhaps the terms my rheumy uses 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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