Taken off blood thinners, told I don’t have APS 14 years after being diagnosed. 22 years to find out what was wrong, now don’t know

[Ally7]

I was diagnosed as low positive 14 years ago by a Dr from the lupus centre at Tommies and have been treated with warfarin and was changed to fondaparinux 2 years ago by haematology at Tommies.

Had tias, 3 early miscarriages, fibromyalgia type pain and fatigue brain fog, absences. speech problems. Migraines, vertigo, tinnitus the list goes on. Ms type symptoms

I have never had a clotting event which has been proven but had an unstable inr when on warfarin.

When it was low I would know every time before the blood results, one on bad period of time I had tia symptoms, was hospitalised and later found the level had been accidentally at 1 for about 3 weeks over this time. I only discovered this after I looked in my own notes which were at the bottom of the hospital bed. I told the dr who then prescribed me heparin. The tia symptoms reduced. I explained this to the consultant in London and She said it was coincidence.

They have now stopped anticoagulants and have said I don’t have APS. My bloods are now negative. I had low positives originally 12 weeks apart and La pos in 2018 .

The doctor at Tommies who diagnosed me with APS back in 2006, has now said I don’t have it. He has even changed his mind since he emailed me back in 2020. At that time confirming I did have it but could come off blood thinners. He said I needed to eat healthily, exercise and generally it was self care.

I have been taken off the blood thinner and am trying to be positive that I don’t need it but weeks after my legs are giving way again, tremor, exhaustion worse, walking upstairs is exhausting and causing me to be very breathless for about 10 mins. The fatigue is all consuming, apparently I’m constantly asking the same questions so brain fog much worse. Everything it helped is reverting to how I was prior to diagnosis.

I’ve been discharged by a professor at tommies.

Is anyone else going through a similar time?

I wondered if you have been taken off anticoagulants because you don’t have a proven clot or have been told you don’t actually have aps after being told you had and been treated fairly successfully for it, maybe we could see how many have been affected and get a group together to inform the specialists of the effects this new criteria is actually having on quality of life?

Many thanks for reading this far! ❤️

[user666]

Hi sorry for your stress.

I am in the states where blood thinners would only be given to positive Apl patients during pregnancy if there is a history of miscarriage and discontinued shortly after delivery. And with out evidence of clotting it is very unlikely long term anticoagulation would be prescribed ever here. In the states for years the criteria and treatment of APS has been much stricter than in the uk. INR’s are not usually above 3 either and a history of clotting was needed for diagnosis.

As to the symptoms you are now experiencing, there is actually zero evidence that warfarin does anything other than prevent clots while it can often causes dangerous bleeds. So its benefits must out weigh the risks and without a history of clotting it does not meet that criteria. Zero studies support the claims often heard that warfarin helps any other symptoms of APS so its only benefit in actuality is clot prevention. So maybe your present symptoms are coincidental or stress produced.

I would give anything to no longer be on plavix and warfarin but with history of strokes it is unlikely.

Keep active , try to keep your cholesterol low, and if trying to conceive have your antibodies tested and discuss aspirin and lovenox. And try and see this as the great news it is!

[Jumper99 in reply to user666]

In APS, miscarriages are thought to arise from blood clots in the placenta (as per APS Foundation of America) so is proof of clotting and accepted as clinical evidence. The problem should only be if the patients blood tests become normal again after the pregnancy. If they remain positive then surely the diagnostic criteria have been satisfied.

I have heard that research has not proved a link between anticoagulation and the disappearance of the less dangerous symptoms, but there is enormous empirical evidence from patients disagreeing with this. Interesting that APSFA and the UK’s version, APS Support UK still list the low-grade symptoms as being due to APS.

I would not like to be taken off my anticoagulation if it meant the return of all my low grade symptoms.

[KellyInTexas Administrator in reply to Jumper99]

That’s absolutely correct, and thank you for saying so!

This is where a very experienced clinician is worth his/ her weight in gold.

Again and again, each patient is unique.

[Ray46 in reply to Jumper99]

I believe Obstetric APS has always been regarded as separate from Thrombotic APS, not sure the complete pathology of fetal loss is understood. Therefore I don't think it counts as clotting per the diagnostic criteria. [ Same is true in fact for clots that have other established triggers, eg. post-surgery dvt may be considered "provoked" and not a clot for APS diagnosis purposes]. My understanding is that Obstetric APS is not usually treated outside of pregnancy, even if bloods remain positive (I think 1-5% of the population are typically +ve and only a very small fraction of those actually have APS).

There's a couple of example papers on the difference, and the ongoing risk profile here: arthritis-research.biomedce... and here:lupus.bmj.com/content/5/1/e...

From those papers there is clearly still some debate, but the ongoing (outside pregnancy) risk profile for OAPS and TAPS is clearly very different, and even the paper that purports to link OAPS and TAPS states only that "some form" of treatment should be considered for triple +ve or LA +ve (so not all +ves).

As for "low grade" or "less dangerous" symptoms, there is a fundamental medical science/ethics problem that we are never going to get away from: anti-coagulants actually are dangerous drugs with significant (for prescription drug) fatality risk. Warfarin even more so than other newer drugs. Treating "low grade" (not thrombotic / thromboprophylaxis) symptoms with drugs with such a risk is (a) not licensed and (b) arguably not ethical either.

Doctors and medical science are supposed to target best outcome for the patient, which is not always "feels better" - it's often a difficult balancing act, witness the long history of debate on thyroxine over/under treatment. Or look further over the line at Oxycontin/Sackler - if there's one class of drugs that almost always makes patients feel better it's opiates...

To be absolutely clear, I not saying doctors shouldn't investigate, or treat, low grade symptoms, or that patients should just put up with them - but if you going to treat with a drug that has a 0.5% fatality rate per-patient-year you need (as a doctor) to have evidence that treatment will have at least a similar benefit (i.e. reduction in fatal disease symptoms). Or at very least you need an unchallengeable reputation (clinical-god level) and a very good insurer - the latter being increasingly hard to find.

[Jumper99 in reply to Ray46]

Obstetric aps is aps which only happens when you are pregnant. We are not talking about that.

If blood tests continue to be positive after pregnancy (so not obstetric aps) the history of miscarriages is accepted as clinical evidence. That’s according to the nhs website as well as APS Support UK.

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[user666 in reply to Jumper99]

Treatment with blood thinners is not usually approved for patients, even if ApS is diagnosed based on miscarriage, when there is not a history of clotting. The risks far outweigh the benefit with out a clotting history and to tell people otherwise is setting them up for disappointment when their well trained and studied specialist follow the safety protocols and deny warfarin.

Now, HCQ, unlike warfarin, is actually proven to help lower persistent antibodies and reduce joint, skin and fatigue symptoms. With out a clotting history and with multiple positive titers HCQ is what one should be asking about. Not blood thinners!

[KellyInTexas Administrator in reply to user666]

Actually, I will refer you to a top rheumatologist to help guide you with a more comprehensive picture in this. Dr Arvind Kaul. London Lupus Centre.

Sometimes, not always, aspirin may be needed. ( anticoagulant, not “blood thinner”.)

Yes, certainly HCQ would be advisable I’d patient fits the profile .

The current thinking is some women develop obstetric APS only and may never need warfarin.

If they had some symptoms before pregnancy, keep a tighter eye and monitor labs. Maybe aspirin. Re evaluate as time and unfolds.

Again, every patient is different.

[user666 in reply to KellyInTexas]

Aspirin, an antiplatelet not anticoagulant , is over the counter but her doctor should advise on if it should be used at a low dose not an internet group and her specialist has deemed it not essential presently it seems.

I feel many responses on these sites often contradict personal medical advice and contain doctor shaming that puts doubts in many readers minds. That is not helpful and can be very dangerous. Just my two cent observation.

[KellyInTexas Administrator in reply to user666]

I meant to say anti platelet, thanks for the catch!

[Ray46 in reply to Jumper99]

Sorry but I think you are misinterpreting the criteria. The NHS site is sort of correct (as far as it goes) blood tests alone don't confirm APS, blood tests + clinical criteria as listed give a diagnosis of "APS", which can be either obstetric (OAPS) or thrombotic (TAPS). The difference between those two subsets is the clinical part of the criteria, not the timing of the blood tests. Given the detailed timing requirements of the lab testing in the criteria (12 wks after the clinical manifestation and 12wks apart), it would actually be quite difficult to get both required positive tests during pregnancy, I suspect they will almost always be after-pregnancy positives. See: medicalcriteria.com/web/sap...

Obstetric APS by the criteria is exactly what we are discussing here. The issue is that the original poster has no clotting history but does have "low grade" / "less dangerous" symptoms, outside pregnancy. Also, those symptoms appear to respond to anti-coagulation. Some clinicians will diagnose APS in such cases (even without the pregnancy losses), some won't. How should such APS be treated? - there you will also find divergence, and little data. LDA or anti-platelet is closest you will get to a supported recommendation (rec. 3 from the 2001 international task force).

[Annslack]

So sorry to hear that this is happening to you . I dont think you are the only one. I have avoided seeing anyone for years because I am terrified that this would happen to me too. I think its a very good idea to form a group with other patients who have had similar experiences. It sounds as if we have gone backwards in time in the understanding of this illness. It would be worth investigating if there are other specialist who take a more patient centred approach.

Meanwhile I would do all you can to protect yourself. Managing stress is important because it aggravates everything. You could investigate nutritional approaches . I found going gluten free helped. I also found that acupuncture really helped. Obviously there are cost issues but if you can manage it, it might help . I also had fantastic help with something called the Lightening process. I would also research specialists in your area who emphasise listening to patients experience and see if you can get a second opinion.

I think it is appalling that you have been left with no support other than vague well being advice..

Hope some of that is some help and that something can be done to reverse this trend.

[KellyInTexas Administrator in reply to Annslack]

Ann,

What an awful and all too familiar position to be in.

Sadly, you might be very surprised and saddened just how many ( mainly women due to statistics of APS mainly affecting women) I have spoken to who are exactly in your position.

I can say I understand from personal experience.

As some of our trusted doctors lead the natural courses of their own lives , ( personal changes in their careers whether it’s a change of location, retirement, or sadly now for me personally I’ve had two of my doctors pass away), there is always a bit of dread with… what now.

It’s because of the trouble I had early on in the first few weeks and months after my diagnosis and first DVT, which happened in in tandem. ( 2016.)

[Clotia]

Hi Ally,My bloods have proven negative for the last 3 or 4 years and now they are confused as to whether I have APLS too. I’ve had pulmonary embolii which lead to the APLS diagnosis.

With my first negative results, 2 years after diagnosis and being told I’d have to be on blood thinners for life, my local consultant told me I no longer need blood thinners so I came off them. Similar chest pains started occurring again so I took myself into A&E and was given blood thinners again. Phew.! This time I was told that they were for life and I’ll refuse to come off them.

I changed consultants and started visiting St Thomas’s instead as the trust with my own consultant had gone. The young doctor there was great but he’s said I no longer need to see him as I was stable in the blood thinners. They don’t know if I have APLS now either!

It’s all a bit worrying. I have heard from a doctor friend of mine that we have a bad name for ourselves amongst the medical profession (as do people with fibromyalgia) and I get the impression they think many of us are hypochondriacs. Infuriating!

I know this may sound too simple but I’ve always wondered if I contribute to my sticky blood by not drinking enough water so this year I’ve massively increased my consumption - 2 pints in the morning, one in the afternoon and I really do feel better. Clearer, no brain fog. Hope that helps a little.

I just don’t think they really know what APLS is and how it functions completely yet. Exercise and good health are the only things we can do.

What are you going to put on travel insurance if you go away? On a positive note, you won’t have to pay extra anymore if your doctors say you are clear!

Take care and best wishes

Claudia

[GinaD]

Sounds all too familiar. I was dx in 2001 after years of progressing symptoms which were written off as "this patient just wants attention." Finally, a neurologist (now at a Cleveland Clinic hospital) ran an MRI which confirmed dozens, DOZENS! of mini strokes. My LA and cardiolipin antibody tests were high. I was put on warfarin, and BAM! -- all the symptoms just stopped. Since going gluten free in 2004 my LA and cardiolipins are now negative. I had a beata 2 glycoprotein test and it too was negative. Hematologists have wanted me off warfarin, but have confronted my angry refusal with "If I have to set up a glow light in my basement and grow my own curarie, I will do that! Warfarin has been my best friend!"

The most recent hematologist (who says he doesn't really need to see me anymore ) and I agreed that I would keep track of symptoms and stay at the lowest INR possible without symptoms. Currently that number is 1.5, which is, as you may know, hardly thinned at all. But if it goes below 1.5 I have a sore back of the head in the morning, and mild head aches. In other words, my APS "tells" begin.

So...... there may be no evidence yet, but given my experience I do wonder if there is some autoimmune factor in warfarin besides its blood thinning. Don't know, but it makes me wonder.

Good luck! You are in a tough position.

[user666]

As to having a history of clotting and becoming seronegative new studies are showing the risk of coming off of anticoagulation does indeed show risk in Lupus Anticoagulant formally positive patients . My hematologist had been considering allowing me to just be on an plavix but after last year’s American hematology conference he has changed his opinion.

This is what he wrote in my last appointment notes on the subject.

“I did have some new data to share, which was that at the most recent American Society of Hematology meeting a couple of weeks ago, I learned about an upcoming publication from an investigator (who presented a different abstract at a thrombosis session that I moderated at the meeting) reporting that the conversion of a previously positive lupus anticoagulant to negative does not mitigate long-term thrombosis risk, which was initially presented at the International Society on Thrombosis and Haemostasis meeting earlier in the year (Colling M et al, ISTH 2021 Congress;abstract OC 44.2). In Ms. Xxxx’s case, she has never had a positive lupus anticoagulant, but I wonder if we can extrapolate to her previously positive B2 glycoprotein antibody test and surmise that the negative conversion since late 2019 is unlikely to translate to any dampening of her thrombosis risk and that we probably do not need to keep checking her antiphospholipid antibody tests anymore. I suggest continuing her dual anticoagulant treatment.”

Here is the copy of the abstract in question,

abstracts.isth.org/abstract...

This study mostly applies to those patients who turn seronegative with clotting histories.

[MaryF Administrator]

Hiya, please keep a close eye on your symptoms, and seek medical assistance if you think you need it, write symptoms down, keep a diary and seek out help if you need it. This does seem to be happening to a few people. MaryF

[RebeccaP in reply to MaryF]

Delighted this has come up for discussion. I was diagnosed with APS 9 years ago with admission to hospital, and told very lucky did not have a stroke blood was 0.9 very thick. Was in hosoital on warfrin and heprin for 3 weeks to get bloods up to a range of 2-3. I have been on warfrin since. With my INR being checked every 2-3 weeks. My Rheumatologist does my APS bloods twice a year and we go through it. Both last time and this time my APS level were minimal. He has decided now to take me iff Warfrin and put me in Asorin as a precaution. So teaterday my warfrin is eeduced to to mg. Per day aling with 75mg of Asprin for two weeks then off warfrin and just stay on 75 mg. Of Asprin. I must admit I am a bit nervous about this, but have a good relationship with my Rheumatologist and we can discuss in detail. If I have any signs or symptoms of Aps or severe APS I can get help right away. Has anyone else had this combination of being weined off Warfrin whilst transferring over to Asprin. He did not want to stop Warfrin right away with no back up. Rebecca

[HollyHeski Administrator]

Have you got a GP onside?If this was me, either direct or through my GP, I would write back to this consultant, stating your history, before, during and now symptoms - asking for help, stating that if you deteriate any further or have a blood clot, that you would consider team liable as they removed your life saving drugs.

You have nothing to lose?

[Apples2000]

Hi there, I actually worry about this- what you wrote. I don’t want to be on warfarin fir the rest of my life but I worry about coming off them for sone reason too! I have had two blood clots and one was a DVT so maybe I won’t come off of them 🤔. I agree with so many comments on here. Be your own advocate. And hang in there! I’m sorry you are going through this. 😢

[Lure2 in reply to Apples2000]

Hi,

You have been diagnosed with APS and taken Warfarin for 2 years. As to the antibodies; did you test positive twice for one or two or all three?

I also wonder if you have got a Specialist who gives you the Anticoagulation drug Warfarin? Is that Doctor a Specialist of autoimmun illnesses and have patients like us every day?

Do you have big difficulties to handle the Warfarin? Selftesting often enough and keeping a satisfying INR high enough to avoid a new clot?

It is important that when we use Warfarin we can have it in range most of the time otherwise it is no good for us. This illness is too sticky blood. I selftest here in Sweden and monitor my own INR and have the possibility to take bloodtests (INR) at home whenever I want to. The Specialist must also understand how high the INR should be in your case to avoid further incidents. We are all individuals with different symptoms, antibodies etc.

[Mycatmuska]

I was diagnosed with APS 2 years ago. Taking Nattokinase . Now my doctor told me I have high PTT test. I can’t take Aspirin because I have stomach ulcer. Doctor told me to stop Nattokinase. What should I do?