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Hughes Syndrome - APS Support

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Aps INR concern

Jillymo
Jillymo

I have just stared anticoagulation i'm on Acenocoumarol.

I have taken 4 x 1mg for the last two days. The nurse came this morning to do my INR it was 2.2 which was done by a finger prick test.

I am being told I am now in range and to now take 1mg and to now stop my Clopidogrel and Aspirin. I am told the target INR is between 2 and 2.5 !

Obviously I am now worried, do I have reason to be ? ? ? 😱

41 Replies
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HollyHeski
HollyHeskiAdministrator

Hi, what target range did your specialist set? And if he/she didn't I would contact them to ask.

The lowest range is usually 2.5 to 3.5 for APS, did the nurse know this or anything about APS?

Jillymo
Jillymo in reply to HollyHeski

I am not able to contact them it was to late and being a Friday I shall now have to wait until Monday. I am under Dr Cohen but due to lock down my appointment was canceled and a phone consultation was put in place.

The consultant that rang was somebody I hadn't heard of or seen previously she didn't give a target range when she wrote to haematology Dept here in Swindon. I have had two days of taking 4 tablets at 6pm and now that my INR is 2.2 I am to take one tablet and stop both Clopidogrel and Aspirin. I am not confident with such a low INR to do so.

The nurse told me 2 to 2.5 is the range for APs. I disagreed so she had a word with the consultant who confirmed what the nurse was telling me. This is the very same consultant who diagnosed my sticky blood 'many' years ago who stopped my HRT and put on Aspirin but she never followed me up. I really am worried and due to the time unable to contact an APs specialist who hopefully knows what they are doing.

HollyHeski
HollyHeskiAdministrator in reply to Jillymo

I understand your worries, it's always hard swapping over. The clopidogrel and aspirin are anti platelets and won't effect your INR.

The risk now is bleeding, but as you know we have thick sticky blood. I can't advise you as we are not medically trained, I'm slightly reassured that she checked with the consultant.

You know your body so go with your instinct until Monday??

Jillymo
Jillymo in reply to HollyHeski

Unfortunately I know this consultant and had she have understood Aps I would not have suffered tia's / strokes for many years and would have been anticoagulated a long time before now,

Holly I have just managed to get through to haematolgy via another number albeit they closed at 6 I managed to talk to a nurse.

I was insistent 2.2 was a low target for someone with Aps and that I were very worried about stopping my antiplatelet therapy especially as it is now weekend and if I get into difficulty I am unable to contact anyone for advice.

She has left it up to me if I wish to carry on taking my my antiplatelet's over the weekend - that is exactly what I am going to do. Bloods will be done on Monday - should I ask for a vein draw or will a finger prick test be as reliable?

HollyHeski
HollyHeskiAdministrator in reply to Jillymo

That's good, at least its noted. Hopefully Monday you can get thru to Dr Cohen, get an actual INR target for you (as we can all be different).

Cant answer re finger or vein, as I'm not on warfarin - Kelly or Kirsten will probably advise you over the weekend.

As you have decided to stay on clopidogrel & aspirin until you speak to Dr Cohen, just be careful, you may bleed or bruise more easily. Hey - you know that!! Fyi - I'm on clexane, clopidogrel and aspirin daily, this works for me.

MaryF
MaryFAdministrator in reply to HollyHeski

I agree with you, it is awful that so many anticoagulation clinic staff are unaware of the higher target setting needed for patients with Hughes Syndrome/APS. MaryF

Jillymo
Jillymo in reply to MaryF

I agree and feel with a INR of 2.2 I think I would prefer advice from London before stopping my antiplatelets. At this stage I most certainly am not symptom free - far from it.

Ray46
Ray46 in reply to Jillymo

According to at least some of the guidelines INR 2-3 _plus_ an anti-platelet is considered equivalent to 3-4 anyway, so you are probably OK for now. Specialists / consultants should really (in my opinion) give patients a written note of target range, or cc the clinic referral at least - just telling you is no good, it needs to be in writing so you can challenge clinic if necessary. The clinics _should_ be doing what specialists / consultants say, but I am not convinced - certainly my clinic/service has also referred to the BSH guidelines "saying 2-3 for APS" (which they do, or did last time I checked), not sure if they use those to overrule a referral or not.

I actually had multiple referrals from different consultants / specialists with different ranges (2-3 and 3-4), or so I was told (nothing in writing...). So I got to choose and I went with 2-3 - on the basis that going up would be easier than going down and I knew, roughly, which consultants were behind which ranges and which ones I trusted most. I have ended up in 3-4 range anyway, not infrequently, and it seems to make no difference to me in terms of symptoms - if it ever does then I will be asking for a raise! But that's me, I'm weird, we're all different.

If you are LA +ve (I am) then you definitely need vein draws in parallel with fingerprick tests to check the accuracy (not sure how long for, but several months for me), and, even if ok, a re-check every few months (I'm overdue for that, for obvious current events reasons). If you are not LA +ve I'm not sure, but I _think_ my clinic do it for all APS patients. I did have to remind them a few times at first, I think that may have been because they were new to fingerprick machines back then, they seem much more switched on to it now - but that is where I am, the postcode lottery may throw up different results for you.

Jillymo
Jillymo in reply to Ray46

Hi Ray46,

I wasn't going to play russian roulette and take any chances after only two days of taking Acenocoumarol. I personally thought it to early to stop my antiplatelets - especially as I have reacted to both Warfarin and Heparin and was suffering tachycardia the previous day.

I have also had them refer to the BSH guidelines ! When on Warfarin the target was 3.0 and I feel 2.2 is relatively low in comparison. Some say 2-3 others 3-4 so it is all very confusing. I would have thought we are all individual and the aim is to stop symptom's.

If I felt better on a higher INR I would also ask for them to raise - nothing weird about that, we are all striding to feel better. Would any of us choose to take such risky medication to feel no benefit I think not ? You hit the nail on the head it truly is a post code lottery with some consultants reluctant to treat at all. I have hit them all Guy's, St Thomas etc all with different opinions. The only person I had confidence in was Prof Hughes - lovely man who has guided Dr Cohen on my treatment with Acenocoumarol. He felt it might suit me better as I am what's known in the trade as a difficult patient - been difficult all my wretched life. 😏

What is LA + ve ? I am being checked every couple of days at the moment due to the change over of meds. My fuzzy dizzy head doesn't seem to be able to take all these abbreviation's in - in fact it is taking very little in at the moment. Nice to hear from you.

Ray46
Ray46 in reply to Jillymo

LA = Lupus Anticoagulant, one of the tests - the full name being about as confusing as the abbreviation so I don't usually bother expanding it! Sorry.

Jillymo
Jillymo in reply to Ray46

Sorry Ray thick muzzy none functional head isn't helping. It was obvious what it meant, what a 🍩. I have had plenty of LA tests.

I am so dizzy and off balance today I can hardly walk without hanging onto something - this illness sure is hard to live with. Take care

Wittycjt
Wittycjt in reply to Jillymo

This caused my confusion, i see response now!

My range is between 2 and 3 since I had a new heart valve. I seem steady and usually have a reading of 2. ? something. rarely up in the 3's. I take 9 mg of Warfarin Marvan daily. Thats here in Aus. I also take aspirin

I hate it but as needs must. Clapidogrel wasn't for me. I also hate injecting Clexane when I have to go into hospital and be swapped onto heparin. It always takes me months to stabilize. Grrrrrrrrrrr

Jillymo
Jillymo in reply to LindaMorrell

I also hated the heparin and would have painful lumps the size of golf balls from the injection site. Unlike yourself Warfarin wasn't for me but I get on with the Clopidogrel and Aspirin albeit I have still suffered TIAs / strokes whilst on it. I too have heart issues but thankfully not needed surgery.

We are all different and need careful monitoring, I hate it too. 😕

Take care. 😘😷

LindaMorrell
LindaMorrell in reply to Jillymo

Good luck. just keep smiling as best you can.

Jillymo
Jillymo in reply to LindaMorrell

Smiling she says ! ! 😭

Thing they might be worried about is your blood can suddenly change on anticoags especially the tablets by things you eat etc so they may be worried that your blood could become too thin over the weekend 🤷‍♀️ I started sinthrome 2 weeks ago (I wanted to give my body a rest from injecting twice a day and warfarin didn't agree with me) and my blood has only just started rising taking 3mg I do my own finger prick test and yesterday it was 1.9 my range is 2.5 and 3.5. Once my blood gets to 2 I can stop my injections. Yesterday I was advised to take 4mg then 3mg again Saturday and Sunday then retest Monday. Everyone's body is different I guess

Pugmum89
Pugmum89 in reply to Pugmum89

I still have to take aspirin though.

Jillymo
Jillymo in reply to Pugmum89

Both the Warfarin and the Heparin didn't agree with me. I also have a self check machine but its been a while since last used and needs checking plus the strips are now out of date - will get it sorted in the near future when I attend haematology.

I have only been on the Acenocoumarol two days and already they are wanting to stop all my antiplatelet therapy and for me to take 1mg of the acenocoumarol ! No No No my INR was 2.6 on warfarin and I still had a TIA. Before I stop my meds I would rather get advice from London and a target range.

I have very little faith in my local hospital.

Jillymo
Jillymo in reply to Pugmum89

Over the weekend my INR dropped to 1.3 yet the idiots in haematology at my local hospital are still telling me to stop my antigoagulants. Yesterday I had to ring to find out why the INR nurse had not turned up, I hadn't been put on the list ! She came out at 3.30 after my chasing.

I have no faith or confidence in them and have had to get onto London for them to intervene. I was told I did the correct thing by refusing to stop my anticoagulants.

KellyInTexas
KellyInTexasAdministrator

Hi Jilly,

So let me ask a few questions ( I’m sorry I’m behind, so bear with me)

1. Who prescribed your New medication? Was it Professor Hannah Cohen?

2. Who set your INR target range? The one who actually prescribed the drug?

3. I will tell you from personal experience only with Prof Cohen that she is not a fan of mixing aspirin with Warfarin. She told me they “compete at the same binding site” and can cause the inr to be unstable. I’m not sure if this is the case with clopidogrel...

I had failed warfarin so we didn’t spend a lot of time talking about it - and instead spent the appointment time discussing enoxaparin with the addition of clopidogrel.

4. I can also tell you from my personal experience with a “very good hematologist in Texas with good working knowledge of APS but not an APS specialist” that he wanted me to add a little aspirin to my warfarin. He told me to figure out what my dose should be- start with 20mg- and back off if I saw sights of excess bruising, gum or nose bleeds. Check for blood in stool or urine as well. At that time I was running a high inr, so 20 mg was a lot of aspirin.

I can tell you that aspirin did cause me to really bleed. I backed it to 10-15 mg. But my inr was so unstable it could jump to 5.5-7.0 and I felt aspirin in my system was dangerous, so I stopped.

The take home message from my perspective is different specialists feel differently about adding antiplatelet therapies. ( aspirin or clopidogrel .)

It becomes more considered if neurological symptoms are present. Neurologists are often consulted to weigh in on the matter.

My neurologist was a proponent of clopidogrel.

Like Holly says, we are not medical professionals, so cannot advise.

I will say that’s a low inr for APS.

Jillymo
Jillymo in reply to KellyInTexas

It was Dr Cohen and Prof Hughes instruction for me to try Acenocoumarol but it does not look as if she has given a target range, I shall ring her tomorrow to request one.

I would prefer advice from Dr Cohen rather than my local haematologist then I will follow her instruction.

I will request a vein draw in the morning I personally feel it to be more reliable.

I still have the booklet given me when on warfarin we are given and slips, the range given then was 2.5 - 3.0.

I am given a slip with all the information on after each and every INR check which I will keep with the other's.

It is early days but I am sure a pattern will emerge that I can make a note of and hopefully make some sense of.

At this early stage after another TIA a couple of weeks ago I am not taking any chances or leaving myself at risk.

Thanks Kelly.

KellyInTexas
KellyInTexasAdministrator

And... ( sorry did not answer an important question you had) as far as home testing your inr with a finger prick machine ( coagucheck versus

Vein draw ( veni puncture):

It depends

The patient and how Labile ( stable/ unstable- fluctuating ) their particular INR is .

The only way to know is to secure a coagucheck and test it along side ( at the same time or within 30 min if not sooner in my opinion) the Veni puncture.

Then compare for about three or four months the results :

VP versus FP INR values. Make an chart to compliment the yellow card you gave.

Place across the top to make your columns:

Date,

daily dose,

INR,

VP -vs- FP,

Dose Change,

Notes

I label these my “Dosage calendar 📆” and leave a blank line at very top to fill in month. You can print off blanks when needed.

You will see a pattern emerge under the column VP -vs- FP. See what the discrepancy is , how often. Look at your notes. Did something cause it? ( log you green veg up or down to adjust inr .)

This is the only way you will ever know if it will be a reliable method for you.

Lure2
Lure2 in reply to KellyInTexas

Well said Kelly!

Hi Jill,

As I know from before you are NOT primary APS (only having APS).

You have told us you have got diagnoses of Lupus, Sjögrens, Fibromyalgia, Hypothyroidos among others.

As I understand it you are not sure if you have tested positive or negative to Lupus Anticoagulant at the time seeing Prof Hughes.

As to different ranges of INR the Specialists tend to give a primary APS with triplepositive antibodies a higher INR perhaps than a person with SLE and symptoms of APS.

What symptoms did you have when you had your last TIA?

Jillymo
Jillymo in reply to Lure2

Hello Lure2 - nice to here from you

I am triple positive APs - It was Prof Hughes that diagnosed me.

I have various autoimmune conditions and recently diagnosed with small vessel heart disease after suffering heart failure last year.

It seem's all consultants differ when it comes to INR ranges. I personally feel we are all different and our INR should be in a range where we are symptom free.

With regard to TIAs / Strokes they have been varied with loss temporary loss of sight in one eye, with another I lost the of use of my right arm and others I have endured spinning which leaves me with coordination and memory issues.

I hope you are keeping well. 😘💐

Det är ovanligt att vara trippel positive men också ha andra autoimmuna diagnoser som går parallellt med APS: Lupus, Sjögrens, Thyroidea, Fibromyalgi.

What neurological symptoms did you have after your last even of TIA a couple of weeks ago?

Jillymo
Jillymo in reply to Lure2

I noticed my memory was impaired, my concentration poor but most of all I was disorientated for a while - much better now thank you.

Sorry just wrote in Swedish to a friend in Sweden so started in Swedish. Difficult to understand I suppose.

It was meant to be; It is unusal to be triple positive but also have other autoimmun diagnoses which often go parallell with APS like; Lupus, Sjögrens, Thyroidea, Fibromyalgia.

What neurological symptoms did you have after your last event of TIA a couple of weeks ago?

Jillymo
Jillymo in reply to Lure2

It is not as unusual as you think to be triple positive - every test I have had has come back positive.

I have many autoimmune illnesses but now have a very good consultant looking after me.

I must go have my meal. Take care 😘😷

Wittycjt
Wittycjt in reply to Jillymo

So you are positive for LA- lupus anticoagulant? It wasnt clear to me above. I hope this all gets cleared up for you with Dr Cohen tomorrow...feeling for you💕

Jillymo
Jillymo in reply to Wittycjt

I thought you new I were LA positive - have been so for many years.

Let's hope I am able to get hold of Dr Cohen today. 😘

Wittycjt
Wittycjt in reply to Jillymo

I had thought so but was confused due to above conversation in this post so I questioned myself🤯

Jillymo
Jillymo in reply to Wittycjt

It doesn't take much to get us confused these days. 😏

What do you mean with "disorientated"? Of course you are better now as a TIA only lasts for around 24 hours. With all those diagnoses you must feel a lot of different symtoms. .

Jillymo
Jillymo in reply to Lure2

Disorientated - I could not function or focus properly. The TIA where I felt I were spinning lasted longer than 24 hours which was very frightening. The actual spinning did not last long but the after effect was very unpleasant.

Yes I do get many symptoms Lure which makes life difficult because I do not know what illness is causing which symptom.

Bye for now I am going to eat my meal. 🙋🍛🍴☕

Probably microclots you have. Difficult when you do not tolerate usual drugs of course. You have had very good info from Kelly I think how to handle Warfarin. You will probably take another drug than Warfarin, but before when you were on Warfarin you had an INR between 2.5 - 3.0 That sounds good and hope you will manage to get rid of the neurolgical symptoms.

Best wishes

I read what you wrote 3 years ago that the Lupus Anticoagulant test was at one lab positive and at the other lab negative.

I suggest you take a new test for LA now before you plan to take Warfarin or Acenocoumarol. When taking Warfarin it is not possible to take the LA-test.

I have been repeatedly tested and repeatedly LA Positive and now being anticoagulated. I am not in need of retesting I have been diagnosed by Professor Hughes. You have misunderstood what was written in that post.

my target range is between 2.5 and 3.5 so you must get to a place that you trust your doctor

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