I'm feeling lonely as most doctors I meet know very little about APLS. I live in Qld and have only heard of one other case of the disease.
Are there Australians out there? - Hughes Syndrome A...
Are there Australians out there?
![rockcats4 profile image](https://images.hu-production.be/avatars/2f73bcb063c54613bc7d36e345b2a0e4_small@2x_100x100.jpg)
![rockcats4 profile image](https://images.hu-production.be/avatars/2f73bcb063c54613bc7d36e345b2a0e4_small@2x_100x100.jpg)
I believe there are a few QLD'ers out there but I'm a bit closer to Sydney! You may have to wait until someone nearer can give a recommendation for more knowledgable Doctors in Brisbane. With all the State lockdowns it's a bit crazy in Oz ATM. Is there anything specific you are asking about? It's really worth a look through this forum as there are many good heads full of info on here. Welcome and happy hunting.
there is plus 25 million Aussies out there not so many with APS. I live greater northwest of Sydney. My support is from my GP only and we have learnt together over 21 years. My theraputic INR is 3.5-4.0. At diagnosis I had an arterial clot with a bleed causing a massive stroke followed with a large DVT ankle to knee and a PE. I have also had an upper arm DVT with an INR above 3
Hi Lucky1,
You say you had a DVT with an INR above 3. Your therapeutic INR is set at 3.5-4.0.
We know that if the GP test you with a fingerpricktest, perhaps with a CoaguChek XS machine, the INR might be much higher than with a vein-test-INR. That could mean that you in reality have a much lower INR than the fingerstick-bloodstick shows!
The vein-test taken in a hospital or at a good lab is the only real INR you can trust!
Therefor you must do parallelltesting several times to know if there is a difference between the vein- and the fingerpricktest. I wonder that when you had a DVT (if they took a fingerpricktest) with an INR above 3, you had perhaps a lower INR like a bit over 2.0 perhaps.
My INR checks are all from the vein I have not finger prick tested for INR
That is good. Then you know it is the correct value. Hope you also can do it often enough if your INR is erratic.
For 21 years I have been testing every two weeks and weekly if needed for short spells. In the early days if the INR was considered too high I was advised to skip a couple of days of warfarin. Quickly learnt not to do that now if a change is needed it is only by a mg per day or sometimes two days split is usually enough to correct. My current schedule is 4mg per day with two days split (wed & Sat) at 5mg on week 1 and week two only has 1 day at 5mg
![MaryF profile image](https://images.hu-production.be/avatars/4aa31037d5199b736f140d390fae072b_small@2x_100x100.jpg)
Hiya, plenty from Australia on here. I think this thread will open up to information swapping as the local knowledge will be good from our members over there. You may have to consider a trip to Monash University, Wellington Rd, Clayton VIC 3800, Australia this is listed on our GHIC website: ghicworld.org/ Also I notice a Dr David Gillis appears to be writing/co writing research papers in Queensland on APS. pubmed.ncbi.nlm.nih.gov/225... MaryF
Hello There I’m on the Central Coast NSW I’m under my GP and we too have worked our way through things together with the assistance of a haematologist. Most doctors I’ve come across no nothing! I find this forum great and often discuss points with my GP. You are your best advocate keep up with the research and keep healthy. 🙂
Hi there, I’m in northern rivers NSW, also supported by my GP... happy to chat
Hi Rockcats4, yes in QLD too and can totally appreciate what you are saying. I have ventured from GP to GP trying to find one with a particular interest in it, having been diagnosed 4 years ago. I soon came to realise it requires a heap of self involvement to get better aware. This forum is a great resource.
Hello, I'm in south-east Brisbane. I don't have an APS specialist, I am under the care of my GP and like others, he and I have learnt as we go along. I saw a rheumatologist who diagnosed my Rheumatoid Arthritis via bone scans, but I didn't like him at all. I also saw an immunologist who touted himself as an APS specialist, but again I didn't like him and found some of what he said directly contradicted what people on the forum has discussed. I thought the people on here have great advice and experience as they are the ones actually living with the disease. I obviously don't ignore medical advice and my GP and I are stumbling along ok. Best of luck.
Yes I don't expect to find a specialist in Qld. My Gp is great but does not know about the disease. The Warfrin Clinic haematologists and what I read here seems to put me on the right path, combined with my cardiologist who has researched it.