Warfarin and Clopidogrel

A quick question please... I'm concerned as we are in hospital and the cardiac consultant has said now that Dans INR is over 2 (it was 2.1 yesterday) and they want it between 2-3 he is stopping Clopidagril and just carrying on with 6mg of warfarin. Dan tested positive for APS 2 weeks ago which is what caused the blockage (clot) in his heart which led to his cardiac arrest.

Are people just on Warfarin or Clopidagril too? My concern is its a cardiac person that has made the decision but actually it was APS that caused it to happen.

Thank you for any advise!

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26 Replies

  • Clopidogrel! I'll spell it right! X

  • Hi the clot led to the cardiac problem in the first place, I am sure they can reassure you with any detail around this. If at all concerned insist that they talk to each other, the APS Consultant needs to be guiding this! Probably if you talk to the cardiologist, they can at least let you know if they have had that conversation, do remind the cardiologist that many with Hughes Syndrome/APS need to carry an INR at the higher end. Presumably this medication, the two things were started when the clot was still there? MaryF

  • Hi again,

    I agree with what is said already! Important is that they talk to eachother and that the APS-Specialist must be guiding this. As Mary is saying.

    My INR is like Dobiedogz 3.9. Most APS-patients have the higher INR-range.


  • With APS the most important thing is the thickness of the blood. Providing his heart is stable and he is not having symptoms, then maintaining the blood at the right thick/thinness is the priority so you get no more clots. If he can maintain a constant INR in range then he should be good on wafarin. Most people are only taking both to control symptoms not controlled on wafarin alone.

    He is being monitored closely so I would not panic too much but it is important that you get a APS specialist involved in his care as it was that which caused the MI and I doubt the cardiologist has expert knowledge of the disease.

  • Thank you, I'm finding it hard whilst Dan is in the rehab centre and the hospital where his consultants are is elsewhere to speak to anyone - but I'm going to really push this on Monday - my first port of call is the Cardiologist to see if the conversation with Haematologist has happened (and to find out how much of an APS specialist he is - if not insist he has one) I will find out what Dan's INR is today - they were maintaining 2.5 but then reduced his warfarin to 5mg so it dropped to 2.1... Back on 6mg now and the clopidogrel stopped yesterday.. I will keep you posted - over the weekends the consultants are never available :(

  • I understand this is difficult for you. I thought you were due to have a meeting with his Doctors at one point?

    I would find out who is in charge of his care and when they are coming to visit him as they can't always be instructing from a distance. Be calm but assertive and insist on the information. If all you get is "Mr X pops in every day at some point but we don't know when he's coming", then I'd call his secretary and tell her you and your husband want a meeting with him and can she please arrange it for a time when he is in the rehab unit. Doctors are also reluctant sometimes to discuss things with partners without their patients as they are worried about confidentiality, so you might want to head that one off but making sure that they know you both want the meeting, however be warned they will sometimes just turn up and discuss with the patient avoiding the partner seeing them as a nuisance. We have had experience with this with a parent but if that is the case in my opinion it's more about that Dr's ego and not about how they are prepared to work for the patients wellbeing and best interest which may put you in a difficult position while he's in that centre.

    Have you tried to contact a local APS specialist from our list to see if they would be prepared to get involved with his case?

  • I'm on Warfarin, since I suffered a stroke, back in October 2011. Currently, my dose is 4mg one day, 5 mg the next.

  • I had a heart attack due to a blood clot, if it were me I would want to be on a higher INR

  • That's what we keep saying but they are adamant with this 2-3 - I'm going to speak to the cardiologist myself on Monday. Dan had a kink in the artery so that didn't help. I just don't feel like to doctors are communicating with each other. Dan has no other symptoms and didn't before - so the worry is something catastrophic could happen again with no warning - but maybe as his wife and I was so scared when it happened - I'm just worrying too much?!

  • That's your job to be worried!! The standard guidelines for INR in APS at the moment are 2-3, however this is quite controversial and many dispute it. The bottom line is that it should always be based on each individual patient, their history, symptoms and circumstances. The fact that he is NOT having symptoms with an INR of low 2 is good and perhaps he is one who will not need a higher INR. Remember it's a risk versus benefit and he does not want to have his blood too thin that he will have a bleed.

    I would be interested to know which APS antibodies Dan tested positive for and how high the results were. I don't believe you have posted that info before so if you know that it would be helpful.

  • Thank you - this has given me more questions to ask as they just said 'tested positive for APS' but have to test again in 3 months? What is this re test in 3 months? I will ask which APS anti bodies Dan tested positive for and how high. He has no symptoms at all - blood pressure is low 105/65 ish (always been low and is not on beta blockers) no pains, aches, feels great and full of energy (as much as someone in rehab can be) feels happy and awake. He says he feels great! Memory not the best but coming back - that's from the hypoxia he suffered. I am speaking to the cardiologist Monday and will chase up this consultant who discovered is ASP and ask. I have asked our rehab doctor to get us a 2nd opinion as I don't think Dans doctors are communicating. Dans last INR was 2.3 and he will be tested again today.

  • Again it is all part of the diagnostic criteria that when someone tests positive for APS/Hughes that they retest them after 12 weeks to see if they are still positive to confirm the diagnosis.

    10% of the population have the antibodies but don't have the condition. What is strange about your husbands case is that he has had no symptoms at all pre MI. That's not unheard of and there are people, young cases of stroke where this happens. I'm just thinking about this kink in his artery that you mentioned. Is it possible that this could have caused the blood if it was a little sticky to clot at that spot or if he had some plaugue that again that kink contributed to? Perhaps these are questions for the Cardiologist.

    Clearly your husbands case is not straight forward but you are doing so well in your support for him so keep going. I'm sure his memory will improve over time.

  • Thank you - that kink is exactly what I'm thinking. As well as APS but he just had no symptoms and hasn't since.. I will keep you posted of his case and findings this week. He is home today for a visit away from the rehab centre so we're feeling great about these positive steps forward!

  • Enjoy every moment! X

  • Yes, the INR (not how much Warfarin he gets) is what is important. I take 5 mg another take 12 mg and we have the same INR. The INR says how thick the blood is. I feel ok at an INR over 3.5. I have also lung and heart-issues from APS.

    You have to be sure someone who KNOWS about APS is treating him. We have all been going through this with Doctors who do not know enough. That is very dangerous for us.

    You can stop worrying when he has a Doctor who understands that we have too thick blood that has to be stable and properly thinned!!

    Good Luck on Monday!


  • I was on both until my INR was in range of 2-3 then my Clopodogrel was stopped

  • Kirsten...you are within bounds to question the CV specialist. The criteria for "therapeutic INR" range suggest 2-3 with a single venous thrombotic event and no or minimal other risk factors. From what you describe Dan had an arterial clot rather than a venous clot which might warrant an INR of 3-4 to remain therapeutic . As others have suggested, titrating the warfarin is probably preferred to clopidrel. BUT...do discuss as CV specialists often do not have sound experience and use CV data alone rather than the depth of understanding of APS impact. I personally have APS and a decision was made by GI + CV specialists to discontinue warfarin prior to routine colonoscopy. I asked for data and they had lots of CV patient safety data for their bridging protocol...but no evidence for safety w/APS. I ended up having a TIA. SO, ask, question...and verify.

  • Having had DVT and PE I was told that above 2 ie in my inr range of 2 to 3 then warfarin alone is treatment only adding other (for me heparin) if inr drops below 2 as clot risk is increased lower than 2.

    For Docs it's a balance of stopping us clot but not bleed out and they will err on side of caution. I had mri scans to check effect on brain and there wasn't any unusual scarring to warrant a higher inr apparently although I was told there were marks.. I do however feel more alive when it's on the high side but this doesn't count much and I guess with an active job then a lower inr puts me at less bleed risk.

    They may well just want to stabilise him and then monitor range later. You/he can push for more on this as appropriate.

    Just remember we are in theory as much at risk of bleeding as clotting to a Doc ...

  • Thank you! Feels like a minefield sometimes - I'm speaking to all of his doctors this week to get some answers.

  • Thank you everyone! Dans INR was 2.3 at last test and he will be retested today. I will be speaking to all of his consultants this week to see how they are deciding their treatments and meds - based on their communication with each other. I do feel like it's a bit of a minefield and have found this group really helpful giving me a little more knowledge and some good questions to ask. After what we've been through with a 98% blockage in the main left artery which led to the cardiac arrest - we want no more clots! But neither do we want any bleeds! Thanks again and I will keep you posted.

  • I can tell you that "we do not bleed from APS but clot". I must say that during the years I have been on this site I have not heard of anyone here bleeding from Warfarin but hundreds clotting. The Doctors who do not understand APS are of course afraid to let us go higher.

    Your husband should have a much higher INR than 2.3! Hope you can help him to a Doctor who really knows about APS. All of us have been through this fight with Doctors that will not or do not understand! I wish you Good Luck again!


  • Thank you - I am trying so hard to deal with it all and been baffled with science. I hope to get answers this week when I FINALLY get to speak to consultants..

    Are there ever cases where INR is OK between 2-3? Or does is always have to be higher?

  • I suggest you read what APsnotFab has answered earlier. She knows a lot of these things.

    You know we are not medical trained only have experience after several years with this illness.

    I would like to say this; I have all the three antibodies positive (venous and arterial microclots). I have them in high titres also. Have had it for 14 years like that. I feel best at an INR near 4.0. The microclots are perhaps more dangerous as they can not see them on a Scan of today but as I understand I have had thousands of them and they do damage to our body. I know.

    It sounds as if Dan has arterial clots (see what rhmmsg writes 21 hours ago) and then we often need a higher INR than 2.0 - 3.0. Also if he has all the three antibodies and especially Lupus Anticogulant (one of the three) in his blood and also if he has it in high or low or medium high titres. All these things are important for a Doctor. And we are all individuals.

    We usually say that we want to be anticoagulated up to a range till the symptoms disappear, but in Dans case it could be dangerous to wait for another symptom I guess.

    APS is difficult and you have a great job I understand it very well and that we make you feel worried. I am sorry for that but it is so very important that he gets your help now! We do not want him to have more strokes do we?


  • Thank you - so helpful and I really do appreciate all of this advice! I will get answers this week and manage to speak to his consultants. It's the cardiac man who's leading it and I feel it should be the one who realised APS . I will also ask his levels in those areas. Thank you again

  • After 9 tough months I finally convinced my Hemotologist to keep me at 3.7 and he researched and said YES! No headaches only sometimes! He may feel more energetic with higher INR! I live in USA where APS is a bad word!!! Lol... Persevere speak up! You are only one to advocate for your hubby! You have to be firm! If not they'll chew u up and throw you to the lions! Lol... Good Luck and Godspeed

  • How are things going now are things adjusted? If you're still having problems regarding the INR see answer to question of the month for November as professor Hughes answers this verbally on video. Keep us posted. God be watching over him!

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