Hi and sorry to bother everyone again with my questions i should maybe already know............should i be seeing a Rheumatologist?? Ive been taking blood thinners for 9 months now and never had a rheumatologist mentioned to me from my consultant or GP.
Was just curious as its been mentioned here,Thanks.
My husband, after diagnosis, was left with his GP for 2 years to manage his warfarin, and that was it. When he had surgery last year he wasn't under a rhumy and had complications so yes, I personally would suggest asking for a referal to one, just to make sure that APS is all you have, and that you are being managed correctly. Depending on how "well" you are would depend on how often you need to see them.
Thanks Tiggercat, thats helped greatly, sorry can I be a total pain and ask what is it that causes the issues, what i mean is do the blood thinners affect bones
Heparin can affect the calcium levels in the bones ... not sure if warfarin does or not.
But I think most of the issues come from the antiphospholipids attacking your immune system and various parts of your body. Also if your blood thinners are not at the right level for you clotting can occur or other symptoms might be worse.
APLS is a very complicated condition and affects everyone differently, there are no simple answers and finding good medical help can be a challenge. It often takes a good while to get a good treatment plan in place.
I agree with the above. aPLS can be managed just fine by a Knowledgable GP --except when it can't. I know from experience that when your symptoms dive into unknown territory it is best to already have a specialist in your corner who can readily ID the new presentation and deal with it. The thing about autoimmunity? If you dont squash a set misbehaving antibodies, they will encourage themselves to more and more attacks of intra-body vandalism.
Work on finding a knowledgable rheumy or hematologist now so that if and when your symptoms take a turn you will be dealing with a doc who, 1 , has seen APLS in all it's obscure glory and 2 , knows you and your history and will be less inclined to dismiss bizarre symptoms as the physical manifestations of a nutter.
If possible it is a good idea to have a rheumatolgoist or haematolgoist in the picture - and our data base via our charity is a good starting point, to see who is nearest you, so you can activate your GP for a referral if in the UK: hughes-syndrome.org/
Mary F x
Thankd everyone for your advice, ive got lots to think about now, im just wondering why I wasnt told to see any specilists, im assuming i should have been?
Finally got to see a Rheumatologist.
Rheumatologist in Kent, UK 
Why a rheumatologist?
Hi been reffered to a haematologist by my rheumatologist ,ive got polyglandular auto immune failure.Rhuematologist suspects APS,hughes .
NZ Rheumatologist
