Is there anyone from Australia here? And if there is what is your experience of Australian doctors and their knowledge of Hughes Syndrome?

[MaryF Administrator]

Hello there, we have a number of Australians on here, and some real help has been found, however the care is very scanty so you have to travel a little. WayneL on this forum has recently found some very good care for his daughter. You could read his blogs and updates. Also when others from Australia see this post, you will find, there are quite a few. Mary F x

[Hidden in reply to MaryF]

Thanks MaryF. Unfortunately I am unable to travel very far anymore, (at least presently) I am always hoping this will change, I have developed interstitial lung disease (from the APS) which is of course progressive. However, if there was some ray of hope I might be able to summon some strength and see if I could manage to make it.

[MaryF Administrator in reply to Hidden]

Well hopefully the Australians on here will guide you to your nearest possible help. I am sure something will come of this. Even if it the correct phone contact for your current doctors.. Others have had this happen, sometimes a telephone conference for your care, with someone with expertise who is out of area - (even London Bridge Hospital UK), so that locally they can be guided to give you more detailed care. Best wishes Mary F x

[lucky1]

Where in Australia are you?

Wayne mentioned in the response above is from Geelong Vic and recently had good service from a hospital in Melbourne.

I live near Sydney and my care is under the responsibility of my local GP

.

[marycath in reply to lucky1]

Hi Lucky 1

I am in north Qld and went to several specialists in Brisbane and Melbourne supposedly knowing APS, but didn't. Luckily I've been on the Hughes Forum and Foundation since 2007 with great help from that site, after severe cardiovascular problems for many years, with positive tests in 2007. Luckily I found an eye specialist here from Holland who knows APS from University there, and treated my eye- Retinal APS, gave me the referral I wanted to go to London Bridge Hospital in May 2010. Definite APS d/x from London doctor, giving me details of a lady rheumatologist in Sydney. Have been down 3 times, of course treatment is ongoing. All the best.The Foundation gave me details of an Australian who wanted to publicise APS, as she had had 10 miscarriages. I emailed her and surprised to find she lives 2 hours from me. Has now 3 children, was helped by a doctor 3 hours drive from here, who was interested in APS. GP does not want to know at all, so new one to find.

[lucky1 in reply to marycath]

you know me as Peter from APLSUK site

[babe123 in reply to marycath]

Hi lucky 1, you mentioned 2 years ago lady that lived a couple hours away had 10 miscarriages and now has 3 children. I'm having a very rough time with same and adore to be connected with that lady, if at possible.

[babe123 in reply to marycath]

Hi Marycath,

I msg accidentally to lucky1 about lady you mentioned that experienced 10 miscarriages with APS and now has 3 children.

Amazing story. Just wondering any way connecting with this lady??

I'm experiencing same. Thanks kirsty

[Hidden in reply to lucky1]

I'm on the Sunshine Coast, Queensland, lucky1. I am currently being managed by the Royal Brisbane Hospital, they are very good and my hematologist there has been treating me since 2007. However I have recurring clots in brain and lungs even on warfarin, even in my therapeutic range.

I have seen several rheumatologists and they talk about plaquenil, plasmapheresis and rituximab like they in some distant realm and that perhaps "one day" "we" can try them but for now it's just warfarin and cross your fingers - my last PE was 2 months ago.

My GP and the hospital do not work well together

[tassie]

I'm in Tassie and although my rheumatologist is supposed to know about APLS I don't think she has any idea. The ER here is less than helpful and thinks I'm a nutcase and my GP is sympathetic and willing to learn.

I had good care whilst pregnant with my last but apart from that it has been so very frustrating!

As others have said Wayne has found a good doc.

[marycath in reply to tassie]

Hi Tassie

I've spoken to you before online. Sorry you don't think you are getting anywhere

[tassie in reply to marycath]

waves to marycath

[Hidden in reply to tassie]

Hi tassie,

I can understand your frustration. For the most part my experience with doctors I have consulted with has been they may smile and act like they know the name Antiphospholipid Antibody Syndrome and it causes blood clots - but beyond that they really don't know much else.

I am so tired, I am very weak and half of my battle is with doctors and trying to get them to do more than just thin my blood, if it were only about thinning a patients blood then I think we would all be much better by now!

[Lozzer]

Hi Lisa Marie,

I have always lived near Sydney although coincidentally I was first diagnosed on the Sunshine Coast. I have a great hematologist, and immunologist and a very supportive GP.

I've had primary APS for about 12 years now and have been fortunate in that although there have been complications, I havent really had any major clotting episodes since the DVT that generated my original diagnosis. However I've had several bouts of hemolytic anemia which is primarily treated with Prednisone.

Although others on the forum may advise otherwise, in my experience treatment is essentially managing blood viscosity ie its thickness and as many others on here have posted, while ever their blood is kept sufficiently thinned they usually experience an improvement in their general health.

My INR varied quite a bit on warfarin and so I've been on Clexane for about two years. It does require daily self injections but although there's that inconvenience my blood viscosity has been very good.

As you have discovered, many doctors know a little about APS but few know a lot. I strongly recommend that you keep searching until you find someone that satisfies the latter. Even if they concur with your current treatment you have at least sought second and third opinions. Its your health!

Ideally you want someone within driving distance of you. My immunologist is Prof Steven Krillis at St George Hospital in Sydney and he is considered a world authority on APS. I'd suggest you ring the hospital, ask for his office and request his recommendation for APS specialists in SE Queensland. Good luck.

[Hidden in reply to Lozzer]

Hi Lozzer,

Like you I have Primary APS, but developed secondary conditions because of it and a number of major clotting events have since occurred even with warfarin management.

I thought once on warfarin my life would improve, however that has not been the case. Since 2007 I have only had about 2 months during which I felt (and that was very early in 2007) a reasonable improvement and from then on it has been nothing but a slow decline to this present time.

Thank you so much for your info regarding Prof Steven Krillis, I will make contact with his office ASAP.

Take care.

[Mystynzl]

Hey,

Im in Perth...I have catastrophic hughes and am lucky to have a GP who has attended prof huges lectures. I recently saw a heamo who told my gp to put me on asprin.....PLONKER!

My GP has now contacted London direct...so we will wait and see.

Keep Well

Mysty

[Hidden in reply to Mystynzl]

Hi Mysty,

Wow you are lucky to have a GP who is that switched on, that is so rare! Hmmm yes you do get those "PLONKERS"!!! It's hard having to battle through them!

I hope that it all works out for you, as every doctor fully educated about APS is a victory and makes it better for the future awareness Hughes Syndrome!

Take care.

Lisa Marie

[MaryF Administrator]

Well done everybody, lots of ideas in the pot now! Mary F x

[Hidden in reply to MaryF]

Thank you MaryF and Thank you to everyone who replied, keep well. Lisa Marie xx

[WayneL]

Hi, All.

Sorry I haven't been around much lately, but we have been very busy having tests etc done.

Have some results back but not all confirmed as we haven't seen the specialist since my daughter's hospital stay.

Her GP has confirmed that she has a very high Lupus count,[we already suspected this, but it was nice to have it confirmed] and that she also has cerebral vasculitis (which is being treated by medication0. but beyond that we are waiting til we see Dr Godfrey next week.

I must say what great care we were treated with by the staff at St Vincents in Melbourne.

And also too, his team of registrars from all manner of specialties [ neurology, hematology etc.] that have done a very thorough and professional job.

It was so great to finally find someone who had any practical knowledge of Hughes and its associated symptoms.

I'm sure Dr Godfrey was using her as a guinea pig on his team, but if it helps them learn about this disease then we say go for it!

When I have more news I will post an update.

Thanks to all on this site, as without you all we would not have found help.

You are ammazing and are in our thoughts and prayers.

Wayne L

[Penstar]

Hi Lisa Maree

Genrally I feel we are educating the medical world and we take our chronic condition much more serious that the general Australian Medical world. However I have come across a very skilled and articulate DR Timmothy Godfrey ( Melbourne ) that has worked tirelessly beside Dr Hughes himsellf at ST Thomas' London!

It took me 6 months to get into to see him at St Vincent's Private but probably could see him earlier at his private room in Melvern. He does come across as stern and very frank, but at least for once I did not feel I was having to justify symptoms and he was very interested, somewhat fascinated in my life story....

Not one DR had correctly diagnosed me until 36 years of age. Dr Tim Godfrey was able to confirm my diagnosis without quest being a second opinion to ensure we were finally on the right track of a very long road to find out what was really wrong with my health.

I felt so good in his consulting rooms, I did not have to explain the minor or major symptoms of CAPS for once I was talking to DR Hughes text book ..... So many zigsaw puzzle bits came together that day!

Regards Penstar