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[ann1970]

Hi, was diagnosed with APS on Monday. I'm 47, healthy, had an unprovoked dvt last june, that dispersed and travelled to my lung and created 3 new clots on the lung sitting on my heart! After a short stay in hospital, I was put on riveroxoban, after a few months, I had another dvt, was then put on tinzaparin injections, which I am still on, until they can sort out my wafarin next week. I live in West Wales, UK, and according to the NHS website, it is meant to be a rare condition and that I should be on a 'rare disease list' - is this true? Also, having looked on APS UK website, I should have a specialist! All my haemotologist said on Monday was that clinically, she couldn't do anymore for me and so she would see me less now and would leave me in the hands of my wafarin nurses - is this what happens to you??Any help and advice would be welcome

Thankyou for any input.

[HollyHeski Administrator]

Welcome - you have landed on the right site.

It is very important for you to get an APS specialist asap. We have a list of recommended consultants on the top right hand corner.

Also good website is GHIC - Graham Hughes International charity, which is full of lots of advice and will inform you of the history of our disease Hughes syndrome/APS.

Most people with APS need an INR between 3-4, do you know what your hematologist has set? This sometimes causes us a bit of a battle, which is why we need a specialist.

Stay with us, we can share our experiences and give you support. It can be daunting to begin with. x

[ann1970 in reply to HollyHeski]

Thankyou x

[MaryF Administrator]

Hi firstly welcome, you will have great support on here, we have our own specialists, listed under pinned posts over on the right hand side, and also many listed on our charity website, the only charity supported and with Professor Graham Hughes. ghic.world/

I am so pleased you have been diagnosed quickly and put on anticoagulants, we all, or most of us also keep an eye on our B12, our D and our Iron, plus Thyroid, this is to make sure levels are correct so things are not made any worse, health wise.

It is a good idea to have regular appointments with your designated Hughes Syndrome/APS, specialist, but once you are more stable you will need less appointments.

Mary F

[ann1970 in reply to MaryF]

Thank you x

[Wittycjt]

Sorry you have APS but welcome! Cindy in NJ

[ann1970 in reply to Wittycjt]

Thanks

[Wittycjt]

Apsnotfab is giving you very solid information.

I am from the US, my doctor who oversees my APS is a hematologist , as we have very few “specialists” here, but that is in America. Trust what apsnotfab has told you.

Don’t wait. You have already had some clots so you are in jeopardy of having worse things happen to you: TIAs, stroke, etc.

I know it is daunting right now but you must find the right physician to anticoagulate you and give you “appropriate” guidance/care.

Best wishes, let us know how it goes, Cindy

[ann1970 in reply to Wittycjt]

Thank you x

[Clairey25]

Hi

Sorry to hear you are having such a difficult time. I was diagnosed with APS in February, having had symptoms for months before. I would reiterate what the others are saying. You need a multi-disciplinary team to care for you.

The Anticoagulation nurses are great on a day to day basis to manage your Warfarin but only once they have been given clear advice from an APS Specialist about an appropriate INR. I arranged a private appt with one from the list on here and once I had seen him he transferred me on to his NHS list. Now I am managed by a Haematologist, Anticoagulation nurses and an APS specialist (usually a Rheumatologist).

I have finally had a few days symptom free now they are all working together. Definitely worth the private fee if you can afford it once.

The other thing I would add is definitely read lots about your condition so you really understand it as you will come across many doctors and nurses who know nothing about it, which can be really worrying. The website recommended above is great as are Graham Hughes’ books and Sticky Blood explained by Kay Thackeray. Not to mention the support on here which is brilliant. You can always find an old post which describes your current symptoms if you are worried even if you don’t want to add a post about yourself.

Hope you get your symptoms under control soon

best wishes

[ann1970 in reply to Clairey25]

Thank you x

[ann1970]

Thank you, I will be looking into it further x

[Lure2]

Hi, I agree with the others. Especially get a Specialist of autoimmun illnesses and an Anticoagulation drug that will thin your blood at a stable and right INR.

I can understand that is is difficult to stop smoking. How does it go for you?

Best wishes

[ann1970]

Thanks, the smoking I gave up straight away in June, no hassle didn't think about it, however, after the shock of the second one in October while on riveroxoban, my nerves went to shreds and I started back, not the twenty a day I used to smoke, between three and five a day. Tried so hard to give them up, but just couldn't, and then had my diagnosis on Mon and knew that I had to eliminate any external causes and so I gave up there and then. Xx