Newly Diagnosed APS.

[Kev667]

Hi all,

A bit confused: having had 2 PE over a 2yrs diagnosed APS ,single positive to LA. The diagnosed came from a consultant haematologist using my works private health insurance Vitality . Now I have been diagnosed the private health care stops. I have started a nhs warfarin clinic and have a gp.

I often hear people talk about their consultant. Should I have a NHS consultant on APS to monitor / touch base with from time to time ? Or is the warfarin clinic and GP sufficient for my care?

Thanks

Kevin

[GinaD]

Are you in the UK? I a,m certainly not familiar with NIH details. I do suggest you read a book or two on antiphospholipid syndrome and keep track of any symptoms. For me.. after I began warfarin all my symptoms disappeared. I do see a hematologist every 6-12 months. I continue to follow the regimen suggested by the diagnosing hematologist: avoid leg constrictions, walk frequently through the day, drink water not sugar laden colas, eat a consistent amount of vitamin K foods and pay attention to any warning signs of clots. My annual hematologist appointments are usually downright boring, but we agree, just in case something pops up ( or clots up,)) its good to have a knowledgable doctor in my corner. Ever since going gluten free in 2004, all my APS blood work has been negative. There is a strong correlation between undiagnosed food allergies and development of autoimmune issues, so, you might explore possible food allergies or sensitivities.

[chrissybell]

I'm with the NHS had multiple bilateral PE's thta should have killed me off - walking miracle my local NHS hospital said. Got referred to Guys in London (via a private health consultation with London Bridge clinic). Under Guys for about 7 years, then last year they discharged me back to my GP (only) as they have too many patients and are in crisis with patient need. If your GP is good with APS then you're probably OK with that as long as medicated. (I was not stable on warfarin so moved to a NOAC (new oral anticoagulant), which works quite differently to warfarin. But you should be fine unless you get symptoms to be under a decent GP. Then if you need it they should refer you to either a haematologist or rheumatologist - they are specialists in the UK in most areas, look under APS specialists and possibly ask your GP to refer you to one of them (closest to you) if you have any worries, or if our GP has any concerns. Good Luck. (I used to be reviewed at Guys once a year, then re covid it slipped to 2 years then I was only 'chatted to' on the phone and passed to my GP, who too reviewed over the phone, after I got a BT done at my local hospital. But if you have symptoms then you might need referring. If it's just a case of you are stable on warfarin, the GP and inr clinic should be fine to look after you.

[HollyHeski Administrator]

Hi Kevin, most people struggle to get to see a specialist to get diagnosed, once diagnosed they tend to stick under that clinic.One option would be to see if you can be referred to your private consulrant under the NHS?

If you are stable and have no symptoms, your GP and warfarin clinic should be enough - I say should, because sometimes something crops up that needs specialist understanding?

I've read that it's now having had a second clot that you are starting warfarin? I'm wondering who has referred you to warfarin clinic and set your INR high enough? Should be set between 3-4 ?

I would have a chat with your GP and if you both decide to be referred to an APS specialist, let us know where you are, as we can suggest consultants in your area?

The key here is to have confidence managing your APS, preventing further clots and having quality life.

[MaryF Administrator]

Hiya and welcome it would be good to have a consultant, there is a list on here ghicworld.org/ Many do both private and NHS so worth looking into both avenues, it would be better for your GP as well as you to have a decent specialist in the picture. MaryF

[Louloubug]

Hi there, I am from Canada, and I don't know what a consultant is.So, I have a lot of experience with living with APS.

IN,2018 I WAS ON LIFE SUPPORT FOR CAPS. ONLY 43PER SURVIVE

CAPS. BUT TO ANSWER UR ?

I SUGGEST THAT YOU ALSO GET A RHEUMATOLOGY MD ON UR TEAM. ALSO I THINK U SHOULD GET A COAGU-CHECK PERSONAL INR MACHINE. I HAVE ONE, AND I THINK IT GIVES ME A BETTER QUALITY OF LIFE.