APS awareness and treatment

I realise similar questions have been asked in the past, but APS Fab's li to the survey got me thinking.

I had to change GPs recently (house move), so in my introductory appointment at the surgery, I obviously told him about being APS. I also had a specialist appointment at St. Mark's in London for a contributory condition but not for APS issues.

In both cases, they sort of asked whether I had any contact with haematologists, or APS specialists to "manage" my condition. I realised I did not.

I was diagnosed in 2009, following extended illness with UC and several clotting incidents (DVTs and PEs), at the time thought to be caused by UC and periods of illness induced inactivity - even though some clots occurred in hospital while under clexane/heparin cover. The diagnosis was explained - sticky blood, etc. The treatment option was warfarin, for life, or until a wider range of drugs became tested and licenced (early days of NOAC research).

Because I was in the Army, being on warfarin meant I couldn't do some of my job and was restricted to what I could do and where I could be deployed. I asked whether there could be any change to my warfarinisation, but the reply was that any Anti-Coag would have the same effect, so the limitation was not APS, but treating it.

The next contact related to APS was last year, to request a change from warfarin to a NOAC to make management easier - I was leaving the Army and thought regular INR tests might be difficult to manage. I switched to Rivaroxaban.

So, bottom line, I haven't been under any sort of haematology or APS specialist (to my knowledge), almost as if diagnosis and treatment with warfarin was it. There has been no follow up without me requesting it, to attempt to improve my situation.

Is this normal? Do I need to see anyone, even if at 5 or 10 year intervals? Can APS subside, in the same way it apparently "happened" over my period of illness? Has the assumption been that because my UC treatment remains the priority and ongoing, that the APS is managed by warfarin and now Rivaroxaban, so that's it?

Phew. I'm not expecting a silver lining, I don't even know if there's a cloud. I'm managing my conditions, but sometimes wonder if there's anything I'm missing - I'm not one for Internet research and self diagnosis/treatment theories, but equally feel like suggesting to my doctor I need to see a specialist, when there's nothing "wrong" is taking up valuable resources.

Thanks for reading!

7 Replies

  • As you have had a clotting event & a pe, rivoraxapan may not be enough for you?

    Always worth having a specialist as we are all different with our APS and treatment plan.

    If you are completly happy, stable, symptom free, and happy with your GP then leave alone and enjoy life.

    If new symptoms or worries arrive you can always ask to see specialist then.

    Im the opposite, having recently moved, my new GP has good knowledge of APS but wont do anything without my specialists say so.

  • Hi, thanks for your post, regardless of your path to diagnosis, any GP is going to be more comfortable with your care if they and you are guided by a specialist in this field. Over on the right hand side of the forum are the pinned posts, one of them, has the list of specialists on for each area in the UK. Best to alert your GP to these otherwise they might send you to a specialist with no working or up to date knowledge of Hughes Syndrome/APS. MaryF

  • Hi Cormorantwatcher!

    We all need a Specialist of autoimmun illnesses. We all need a proper anticoagulation which is steady and will protect us from having clots, DVTs, PEs or damage to other inner organs. The most common drug today is Warfarin and it must be kept at a high INR around 3.5 - 4.0 for those of us with arterial as well as venus clots.

    Those of us with arterial clots can not use the oral drugs as they are not allowed for those with an INR over 3.0.

    If we are not anticoagulated the illness can go on all the time. Some us have also micro-clots and those are so tiny and not seen on a Scan of today and can also even go undetected by ourselves.

    The other drug used for us is LMW Heparin which is easier to manage.

    You live in Great Britain (not the US where there are problems for our members to get a Specialist and the right treatment) and if you have the possiblity try to educate yourself as much as possible about your illness and get a really good Expert. That is my advice to you!

    Best wishes from Kerstin in Stockholm

  • Thanks guys. It's important for me to clarify a few things..

    I've been on this site for some time and it's been really beneficial, not just for me personally, but in sharing experiences which may give others more information.

    I was only ever given therapeutic range of 2-3 on warfarin. I've had no clots since diagnosis and permanent anti coagulation (warfarin, now rivaroxaban).

    My understanding is everyone reacts differently - on warfarin, broadly weight based dose, tweaked to get you 'in-range'. I was fairly stable on warfarin, blips in INR for illness, complications, hospital admissions/surgery.

    It was hard to switch to rivaroxaban and just "trust" the science. It wasn't an overnight switch - my then GP checked with my Gastro consultant, my Gastro surgeon and with haematology for any reasons not to switch and any considerations. I then made the switch. But there are no checks, so presumably I watch for any clotting symptoms and hit A&E ASAP (I've had 3 or 4 DVTs and 1 single PE and 1 Bi-lateral PE).

    All my incidences of clotting were around admission for UC (so on heparin in hospital) less the last PE, the day after I reached the end of that 6 month warfarin treatment for the previous clot...my point is that APS isn't (or wasn't) instantly checked for because I had another condition that predisposed me to clots. From reading MANY other posts on here, people present APS symptoms - migraines, fuzziness, clotting, mini-strokes, miscarriages and the medical professionals draw a blank. So is APS known widely enough?

    Finally, I have an issue (concern, is more accurate) with checking myself onto a specialist's waiting list via my GP - there's nothing wrong at the moment, my GP (And St Mark's specialist) have requested haematology advice as to whether anything could be done differently (not necessarily better), so while I broadly agree with prevention being better than cure, adding another appointment, probably in 6 months or more, might not achieve much, but I'll discuss it at my next GP/Specialist/Surgical appointment, as on occasion, medical specialists have admitted to not knowing enough about some conditions to offer full care (nobody can know 100% in everything, after all).

    Thanks again for your comments and advice.


  • APS is not known widely enough! (As an answer to your question above.) Far from that.....!

    That is why it is so exstremely important that you see a Specialist of autoimmun illnesses (most likely a Rheumatologist or even sometimes a Hematologist) who understands that if you once have got DVTs and clots etc you always will have the risque to have another DVT or stroke etc as long as you are not properly anticoagulated at a steady and rather high INR. The antibodies may go down but you will always have the illness (once diagnosed) and the risque of suddenly have a DVT, PE or stroke or to damage other inner organs.

    I can tell you that they (the Specialists after having my diagnose) have never seen a clot on me on any Scan as I have microemboli and microclots (TIAs) that are so tiny that they are not seen on a Scan but I am triple-positive with persistantly high titres of the antibodies for 15 years. Today I have pulmonary hypertension and troble with my right heart chamber. See to it that you do not have too high bloodpressure.

    As a fact prof Hughes ( who is the man who really knows this illness) says that most of us need an INR between 3.5 - 4.0 not to clot and that we do not bleed from this illness but clot as we have very thick and sticky blood. Most Doctors and nurses aswell do not understand this.

    Keep well!


  • Thanks Kerstin - I was never that high for INR. Not sure if that's because they didn't know and I've been lucky, or 2 to 3 was where they deemed I needed to be. Never discussed. Never had an incident since under anti-coag though.

    Never had a barrage of scans etc, but probably because they caught I was APS, kept me anti-coagulated and no symptoms since.

    A rheumy might be able to throw light on any linkages between UC (now boringly rearing it's head on what's left of my digestive system) and APS and if there is anything I need to do/avoid.

    Generally, I'm healthy. Yes, I need to take rivaroxaban, inject with humira, get frequent iron infusions and a few other managements, but I can exercise, work, do parent stuff, so all is good enough.

    The bizarrest medical professionals have proved to know more than expected about APS and supplied me with info, but I guess that's always the way.

  • I would get yourself under a specialist haematologist as well, because you will need that if further symptoms occur and getting referred at that point might take ages

You may also like...