Hi all,

It turns out I have multiple new sites of osteonecrosis. Most doctors
assume it has something to do with aplastic anaemia (radiologists,
surgeons). The haematologists get quite ticked off about this. These
hameatologists include the leaders in the field of bone marrow failure
syndromes (I was very lucky to get to speak with them and have an
ongoing dialogue) say it is NOT related to the aplastic anaemia. I've
even been in contact with Dr Glueck (mentioned on this group repeatedly
in conjunction with osteonecrosis) and he also says he hasn't
encountered this and it's not due to aplasia.

The osteonecrosis started before ANY steroid treatments in conjuction
with aplasia treatment. After the high dose steroids during both aplasia
treatments, no new areas of osteonecrosis showed up anywhere on bone
scans. Tests for clotting factors that could be contributing to the
osteonecrosis are negative (along with RF).

The new areas of pain started in the last 8 weeks and each new area we
MRI there's osteonecrosis. Now one MRI has also shown osteoporosis in
some bones, too! This is despite regular weight training and being
treated with deca durabolin (an anabolic steroid used to reverse
osteoporosis and assist with aplastic anaemia). I should have nice
strong bones. Along with these other factors, some of my bones are
perfectly normal. The only thing that might be contributing to this is
my very high iron levels (ferritin ~1600, 106% saturation), but this is
just speculative. Haemochromatosis patients not uncommonly lose both
femoral heads...but that's usually it (I lost both of those well before
my first aplasia treatment that included high dose steroids).

Have any of you experienced or heard of anything like this, where the
bones just die off for no apparent reason and with no clear contributing
factors? If any of you feel up to it, please mention this wierdness next
time you speak with your RD. Someone, somewhere, must have seen this
before (and probably NOT comorbid with aplastic anaemia). We're at a
loss (we being every specialist I've spoken with about this). The only
thing we can do is allow this to progress. There's no way we can do any
more joint replacements, my platelets are dangerously low as it is.

TIA,

Ari