Specialist in APS Australia - Hughes Syndrome A...

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Specialist in APS Australia

Sev132 profile image
12 Replies

Hi guys

I was wondering if anyone in Sydney Australia is in this group and if so, could they recommend a good specialist for APS?

I have had a few different ones over the years but I can’t seem to find one that specialises in this condition.

Thanks

Sev

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Sev132 profile image
Sev132
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12 Replies
lucky1 profile image
lucky1

I live on the north western outskirts of Sydney. I am only under the care of a GP however

Ozchick profile image
Ozchick in reply tolucky1

So Hills district-ish? If you have transport (Take all day on bus/train!) Try St George at Kogarah but don't know how long you have to wait for appt. He was at a conference with Prof Khamashta from Londonbridge Hospital. I saw Prof K in London a few years ago and he gave me Dr Krilis name if I had no luck with anyone local. Other than that maybe try St Vincents clinics-they might have someone in the haem dept worth a try?

Sorry it took so long to reply but you can pm me if I can help further. I am off to NZ tomorrow for a week but i believe they have internet there!!

Ozchick profile image
Ozchick

Which part of Sydney are you-Just roughly north, south east or west? There is a prof Steve Krilis at St George Hospital. I'm west but have a great Haematologist and Rheumy in Penrith.

MaryF profile image
MaryFAdministrator

Hi, Dr Tim Godfrey over in Melbourne is highly recommended. MaryF

Ozchick profile image
Ozchick in reply toMaryF

He's a little bit far away, Mary ;) (about 800km) but if you can get a cheap flight could be worth it but a bit far for follow ups.

Sev132 profile image
Sev132

I’ve seen Prof Krilis before. I have heard he is the leading specialist in Sydney for APS but I found him a little uneventful (sorry if that offends anyone). He didn’t send me for bloods or anything. I explained my situation (10+ miscarriages and 1 stillborn, no living babies as yet) that I’ve been on clexane for over 5 years since trying to fall pregnant. I also voiced my concern that no one had checked my stats in as many years, he didn’t seem fussed. I guess I’m just trying to find someone who will keep a regular check on me ( I got the impression from him that he is far too busy to see me regularly).

I live in south west Sydney so very close to St George hospital.

Lure2 profile image
Lure2 in reply toSev132

Sorry to hear that you did not find the Doctor interested in your "case" as you had hoped he should be!

Could you phone his secretary or a nurse and ask for a new appointment and if the bloods will be taken later perhaps? Could that be possible to do where you live? We have so different rutines in different countries I believe (live in Sweden).

Best wishes to you from Kerstin in Stockholm

Ozchick profile image
Ozchick

Well, that really sucks! Can you travel to Penrith? My Haem is Prof Stephen Fuller and he works at Nepean Hospital Cancer Care. Takes a while to get first appointment but once you're 'in' it's fine. Bonus is he Bulk Bills-so no out of pocket expenses. Definitely no rushing in the consult and answers any worries you might have. You'll need a referral from GP to see him.

Sev132 profile image
Sev132 in reply toOzchick

Thanks ozchick! I’ll look into it. I’ve heard his name before. Do you know if he also advises on pregnancy and different types of protocols?

Ozchick profile image
Ozchick in reply toSev132

Can't help you there as my child bearing days are well and truly passed! He would have access to many specialists in the hospital. I now see him 6 monthly but he's always said if something's not right come back to see him. I've been seeing him for a few years now and just have blood tests before I see him to check out kidney function and a few other things while taking Xarelto.

Sev132 profile image
Sev132 in reply toOzchick

Thank you!

jtep profile image
jtep

Hi Sev132,

How did you go in your search for an APS or Autoimmune specialist who understands the pregnancy complications? Did you get anywhere with your search? Looking for the same thing in Sydney now.

Thanks!

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