I was diagnosed 1999 with APS locally then confirmed at St Thomas’ by Hunt. After my brain scan revealed multiple infarcts I was put on blood thinners for life. I began testing negative a few years later & have continued to. I’m now under pressure to come off the blood thinners but I don’t want to. I occasionally can’t get my heparin injections so know what going without them feels like. I’m well enough on treatment & want to stay that way.
Is there any research suggesting APS goes away or should be reconsidered as a Rx? It’s always junior doctors who aggressively pursue this line suggesting I don’t have APS. The diagnosis & treatment was life changing but this attitude which has been present the last 10yrs makes me really anxious about attending clinic. Any advice appreciated.
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Jensgoldenpig
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Hi, I have been aware of this thesis of junior docters for quite a while now from St Thomas's and Guys, but I have not seen any research papers or scientific evidence that says we can grow out of APS or be cured?!So your post is very relevant to us all.
I too am under Prof Hunt and have learnt that if I am worried about anything, it's good to write to her outlining any health issues and concerns, this way you know the information you are or will get will come under her remit. Your concerns are genuine and I am sure she will respond. (Though it may take a while).
I suffer great anxiety when the chemist can't get my clexane so the thought of coming off altogether would be horrendous 😫
HollyHeski thank you for your reply & advice, it’s very much appreciated.
I suspected as much as I try to keep up with research & have seen little beyond advances in testing, NOAC’s & theories on aetiology. I’ve heard mention of people being missed diagnosed with APS but can’t find any context & the only thing that looks like my brain scans is MS which they said I don’t have.
I’ve always got on well with Prof Hunt & in the past we’ve had this conversation. She’s accepted I feel better so much better on meds than not but it remains a major fear that they’ll be removed as unfortunately the ever changing consultants I see locally (as well as St T’s) always want to stop them for vague reasons. Last time I got a vague as you get older it gets riskier but no clarification when I pushed for one. I mean come on, INR clinics are full of patients many decades older than me.
Ironic isn’t it that a clinic that diagnosed me after decades of being fobbed me off as a psychiatric case is now making the same type of noises.
Again thanks for the reply & advice I’m due back there in a few months so I’ll see how it goes.
Agree . It’s genetic or can develop after a harsh treatment lije chemo . None of my family haS APS . I did have 6 months Hepatitis C ( slightly fatty liver, non alcoholic ) I had 6 months of anti viral injections, quite a strong treatment , but it cured it after a month! I believe this may have made my APS develop . ( The brain fatigue started after that )
“I’m now under pressure to come off the blood thinners but I don’t want to”
Who is putting you under pressure? First of all no Doctor can withdraw your medication without your consent as treatment has to be discussed and agreed with you. I would ask for evidence about not doing any harm in coming off and also if whoever is asking you to do it has discussed and agreed it with Hunt.
cheers for your reply. Yeah I’m not about to consider it without an explanation & one is never forthcoming.
I’m sure they’d prefer patients agree to changes in treatment but I’m unsure about whether what you say is accurate or even if that matters as I’ve lost access to many treatments I previously relied on for other conditions. No discussion or even notification, just no longer prescribed or available to me & then off rolled from the clinic & ignored. Lockdown made this even easier with many clinics taking the opportunity to ‘review’ their lists.
All this means is that a Doctor - any Doctor, especially a Consultant who has responsibility over a life saving drug, has a responsibility to discuss it with you and get your CONSENT before stopping it - if that’s what you agree.
If it were me I would write a letter saying you wanted it kept on your medical file, state that you don’t want to have warfarin or whatever anticoagulation you are on, stopped and that you want any decisions to be taken with you and Prof Hunt. If they go against that you would certainly be able to complain in the strongest terms - or worse!
Scenario 4: In a patient with APS and a single previous deep vein thrombosis, aPL become persistently negative on follow upAPS is considered an antibody mediated acquired prothrombotic disorder, i.e., some aPL seem to be pivotal in the pathogenesis of thrombosis, though the mechanisms responsible for the emergence of the pathogenic antibodies are not yet understood [2]. There are several types of aPL but only some have been associated with the occurrence of clinical features and are therefore used in clinical practice: IgG and IgM aCL, LA and anti β2 glycoprotein I antibodies [1,2]. IgA aCL are not usually considered pathogenic. Antiphospholipid antibodies are known to fluctuate with time. Discontinuing anticoagulation might be argued in a patient with one venous thromboembolic event whose aPL become persistently negative but there is no prospective evidence to support this view. The absence of the antibodies could indicate disease remission. On the other hand, the aPL measured in clinical practice may simply reflect increased thrombosis risk and not necessarily the actual pathogenic mechanism. At present, there is absolutely no evidence to support management decisions.Clinical practice point 4: In the setting of recurrent thromboembolic events, this patient would be on indefinite long term warfarin irrespective of the aPL status over time. In this patient with a single venous thromboembolic event, discontinuing warfarin therapy might be discussed individually with the patient, with a careful explanation of a risk assessment and stratification strategy for defining the optimal duration of anticoagulant therapy. In the context of an associated autoimmune disease, especially SLE or Wegener's granulomatosis, or other significant cardiovascular risk factors, there would be a compelling evidence based case for continuing indefinite long term warfarin even if the aPL became negative.
Wendy, as far as I am aware, warfarin does not have any affect on the antibodies themselves.
Warfarin will affect the testing ability ( to an extent) of one of the Lupus Anticoagulant antibodies in particular, because it’s tested in a different way. ( there is a work around for this, but many hematologists don’t have the extra steps to do the tests readily available to them. Prof Hunt and Professor Cohen would- large specialized Heme clinics with APS specialist Hematologists.)
After reading your post I thought "Been there. Done that." My current internist is much more knowledgable about how APS fluctuates and that negative APS marker tests do NOT mean a patient should discontinue medication. I left my previous GPs because they both urged me to agree to stop taking warfarin. My resonse: "I'll get a grow light and grow curarie in my basement. I'll the take guesses about how much to eat each day, but I think that staying on warfarin would be safer." They laughed. But I was serious. Warfarin changed my life! The migraines went away. The transient leg swelling went away. My energy levels soared. Those previous 2 GPs were both on the "youngish" side of age. My current doc is not.
what is Rx? I was suggested to come off Rivaroxaban 20 mg , when still new by NHS advice for reasons (?) I refused , not suitable case for Warfarin . I did not want a repeat king it, The brain fatigue of thick blood was gone also. After that with Covid my Haematologist said take it EVERY DAY without fail . Then late 2022 after 3 years negative blood tests she said now safe to go on 10 mg not 20 Rivaroxaban . I hace a 1 yearly Clinic consultation coming up . She just advises if I should continue . I feel better on it. Happy to be on 10 mg if blood tests suggest it .
Antibodies can wax and wain giving a negative result as mine did on the odd occasion. Like other antibodies involved in lupus that are directed against self (auto-antibodies), antiphospholipid antibodies can come and go or increase and decrease.
I had a junior Dr try to stop my medication by telling me I no longer needed it. I enlightened him the condition is for life and by stopping my meds he would be putting my life at risk.
Unfortunately it is a constant battle with both Drs and consultants who do not fully understand the condition.
Despite being a potentially life-threatening condition, the general prognosis for most APS patients is good, and with the correct treatment and lifestyle changes the majority of patients can lead a relatively normal life provided they continue with their medication.
I was under Prof Khamashta, then moved to Prof D'Cruz who a couple of years ago transferred me out to my GP's care - with the proviso that I need to be medicated for life. (Initial diagnoses was after multiple bilateral PE's - 100's off) But I don't think I've ever tested negative, and assume my GPs probably won't bother to keep testing as the test suite is expensive, so I'm on Dabigatran for life (agreed with Prof K originally and my GP on shared care) as I was not compatible with warfarin. But I think all need to be wary.
I think St T’s would prefer I was managed locally but as the only knowledgable local haematologist has retired (Dr Vanessa Martlew) & my GP’s are loath to go near me , it’s unlikely anytime soon.
I feel quite lucky as I was a practice manager for 15+ years (and still locum) and have worked with my local GPs, as well as asking them all to do the APS GP awareness course, so my GP (who has since retired, but am still in touch with as a friend) and my newly named GP I trust. And feel if I needed an onward referral to a specialist, that they, again, would do so, but I 'seem' very stable, and am happy on Dabigatran, so it is a difficult one. If you have a little power you can 'assist' your GPs to learn more (via APS UK), although they are SO under pressure mow it's really tough to learn about anything when they're all so shattered. Best of luck x
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