Hi, Im in the Uk. was told I had lupus anticoagulant after having a clot on my brain (and a DVT whilst on warfarin) My neuro rehab told me in 2018. My GP switched me from warfarin to rivaroxaban as I was never in range of 3-4. From reading posts on here and elsewhere only warfarin is recommended and everybody else seems to be seeing a haemotologist and/or rheumotologist. Should I be seeing one also or is it not really important?
Thanks for any advice you can offer
Debs
Hello and welcome, we have a list of specialists over on the right hand side of the forum under 'pinned posts' which is pretty comprehensive, and some on this charity website: ghic.world/ It is best for you and your GP if you have a consultant guiding expert care, from a place of expertise. Sorry for the short reply, I have a slight problem typing currently and also am in and out of meetings currently, will check back later, but you will get some other replies from members on here and also probably other ADMINS. MaryF
APS falls between Rheum and Haem, and sometimes falls down the cracks, in case of stroke there are also Neurologists who cover it - but generally they have a bad rep around here (although I've had some good ones, I think).
I've been under all three specialities (and more) but am now under just the Rheumys - but that is because (in my opinion) they have the best clinics and APS experience in my area. Some areas of the country there seem to be good Haemos and lousy Rheumys.
But above all you need to see someone who knows this disease. Haemo, Rheumo, Neuro, doesn't matter - it's APS knowledge and experience you want.
And a doctor, or team, that you can get on with and work with.
In terms of drugs, if you can't stay in range and/or are clotting on warfarin then warfarin isn't working for you. In that case _you_ need something else, regardless of what is generally recommended. Warfarin is the only currently licensed APS treatment, unless pregnant in which case LMWH (heparin) is licensed.
With no licensed alternatives, second line if warfarin fails is a bit of an open question - I was told by my specialists that I could have Rivaroxaban in that case (but I couldn't choose it first line), but there are plenty of others on LMWH instead. It is a bold GP who would make that call without specialist support. I would be slightly concerned at what the reasons were for that decision, with the fact that Rivaroxaban is a heck of a lot cheaper than LMWH injections also in mind...
At the end of the day, you want a drug that works for you, the difficulty is that when "works" means "come back in 10yrs and see if you've had another clot or not" that isn't easy to assess.
Hi, welcome. Warfarin is still the main anticoagulant for APS, especially for you having had an arterial clot.
When your INR goes below your range heparin is advisable.
Rivaroxaban was trialled for APS patients with a history of venous clot with a target INR between 2-3.
Rivaroxaban is not recommended for APS patients that are in the higher group and now recently for triple positive APS.
As we are all so individual with our history, symptoms etc we do feel an APS specialist is advisable.
For you I'm concerned that you had a clot whilst on warfarin and although your GP seems to understand APS, I would be wanting reassurance from a specialist?
Where are you in the UK? As others can than can give you recommendations.
Also are you having any current APS symptoms?
Again welcome
Thank you for replying and your advice... I am in Somerset..
I'm on Rivaroxaban, was on Warfarin, but my INR target was always 2 to 3. I was generally fit and healthy-ish otherwise, rather than limited mobility, or any other factor.
I had also clotted while on warfarin, latterly a PE, but previously DVTs. Each instance was "explained" by periods of inactivity and the causal link of Ulcerative Colitis. That's when APS was suggested at the reason.
I only ever saw Haemotologists, but I reached an impasse - I can't be definitively tested for APS while on anti-coagulent, but because of my history (including clots while on anti-coagulent), the risk of stopping treatment to run tests wasn't worth it.
It's much easier now with 1 tablet a day, rather than a handful of warfarin, frequent blood tests and fluctuations in INR when you're ill/eat the wrong thing/or something else disturbs it.
But as the others have suggested, that's my history, thee may be many reasons it doesn't fit. I would hope they wouldn't mistakenly prescribe Rivaroxaban as an alternative if not suitable, but maybe that's down to how specialist they are and asking medical practitioners if they know enough to treat you is a precarious path (although may be essential).
I think youre my 'twin' i also have ulcerative colitis.....on azathioprine
I "had" UC. Total collectomy (in 2008) was supposed to fix it. But recently the small amount of bowel left that could be UC has been giving me trouble. I'm Allergic to aza, so that didn't work. Tried Humira (forget actual drug name) . That didn't work. Back into the investigation cycle... Might know more post April, I have to go to St Mark's for 2nd opinion investigations to assist my Consultant here in Bristol
thats my worry....i really dont want to end up having a collectomy. I hope something gets sorted for you soon... UC is the 'pits'
Was your clot arterial Cormorant?
Thank you to all who have replied..much appreciated... my GP has just retired so time I think to visit my new one and see what she has to say and maybe ask for a referral to someone in the know
Hi, I'm in Devon - I still travel to London St Thomas's to see Prof Hunt, I was sent to her while I lived in Herts and salthough moved I still prefer to see her.
Top right corner underpinned posts we have a list of recommended APS specialist - I do recall someone mentioning they got on well with Taunton specialist
Maybe also look at GHIC/world for more information?
the taunton specialist may be who advices my neoro rehab consultant as I spent months in Musgrove Park Hospital Taunton
Should I take Plaquenil
Should I get checked?
Which specialist should we insist on seeing?
My son has passed on his sickness bug to me. Should i just rest and let nature take its course or should i see gp. 
Should I go for 2nd opinion?
