Are there Australians out there?

[rockcats4]

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.

[Ozchick]

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.

[lucky1]

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

[Lure2 in reply to lucky1]

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.

[lucky1 in reply to Lure2]

My INR checks are all from the vein I have not finger prick tested for INR

[Lure2 in reply to lucky1]

That is good. Then you know it is the correct value. Hope you also can do it often enough if your INR is erratic.

[lucky1 in reply to Lure2]

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

[lucky1 in reply to lucky1]

I have just started consultation on a bridging process for some dental work

[Lure2 in reply to lucky1]

Good! Good Luck!

[MaryF Administrator]

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

[Deedee2014]

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. 🙂

[Julie_T]

Hi there, I’m in northern rivers NSW, also supported by my GP... happy to chat

[KellyInTexas Administrator in reply to Julie_T]

❤️🥰 forums at their best!

[Shane_KTM]

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.

[rockcats4 in reply to Shane_KTM]

Hi there ... yep I have learnt a lot but really docs don’t inform so much..... BUT from the website I have traded a few vitamins which have stabilised me after 4 years!!! Magnesium, zinc d3

[suntap]

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.

[rockcats4]

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.

[rockcats4 in reply to rockcats4]

My cardiologist and haematologist pegged my inr at 2.5 -3.5 and sometimes I have to test every 2nd or 3rd day. It’s all good.