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!
Written by
KirstenW
To view profiles and participate in discussions please or .
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
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
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?!
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!!
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 - 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.
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
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!
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!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Aneurysm and Warfarin
no more clopidogrel but on warfarin
Warfarin 
Warfarin and vitamin K2 supplements
Gastroscopy and Warfarin
