Going for a 2nd opinion! I believe INR is being kept too low

Going for a 2nd opinion! I believe INR is being kept too low

So I finally have the specialist APS consultant appointment in London this afternoon for my husband and a 2nd opinion! The haematologist he is under insists on 2-3 for Dan's INR. But from advice on here a while back, and research that I've done, I think that's too low. I have chased and been given his initial test results (these were done 5 weeks after his sudden cardiac arrest which was due to a clot in a main artery to the heart)

I remember someone very experienced in here asked me if I had his results (but I can't remember who, I'm sorry) So here they are.. I would be grateful and interested to hear peoples opinions on his antibody levels (I know they're really high) if you have knowledge in this area - I'm thinking his INR should be between 3-4.. It's currently 3.0 on the home test so I know it would be thicker i the vein - probably 2.6.

Thanks in advance!

9 Replies

  • Hi,

    I agree with you. I am also triple positive with very high titres and heart/lung-issues. Pulmonary Hypertension and valve-issues.

    He should absolutely not have high bloodpressure.

    If he is selftesting it is important to take double-tests to confirm the differences (if there are any) are always the same with a discrepence of 0,1 - 0,3 which is ok.

    If I have 5.0 in INR on my CoaguChek XS I have 4.0 in the vein at the hospitallab. I have a big difference but the differences are about the same all the time. If the INR is high the difference is bigger.

    I did my last Eco one month ago and the Cardiologist asked me about my INR and when I told him that I had it around 4.0, he looked very satisfied. That was a vein-value we talked of!

    Best wishes from Kerstin in Stockholm

  • Welcome back, good wishes for your success in obtaining answers and a game plan today. Glad he is doing better

  • Hi there and welcome back! Wow! Im not sure Ive seen anyone else's B2GP1 over 500 - thats quite an achievement!

    I am so glad you are getting a second opinion. Having a INR of 2-3 with his results and being triple positive is in my opinion frankly wrong! Everything I have ever read has always said that someone like your husband should be on higher INR 3.5-4.5. Your Hemo is simply treating your husband as a standard blood clot patient and forgetting that he has a very high risk factor for recurrent clotting as well as his blood being too thick to start with!

    Where did you go for your second opinion....London Bridge? Please let us know how you got on we will be very interested in the outcome.

  • I hope the appointment goes well. Most of us fight for a higher inr and feel better for it. When I am below 4 I feel dreadful. Below 3 I inject Clexane. So yes in my opinion Dans inr is much too low!

    Print off any info u can to take with u. Good luck 💋

  • Hi all thanks for your comments... Well it was very interesting - we went to London Bridge and met with a lovely and knowledgable Dr there who has been working with people with APS for over 20 years! He said in his time he has only ever come across 2 others with Dan's levels, events and similarities who showed no symptoms before and have had none since.. However - he agreed Dan needs a 3-4 in principle however we need to take into account that he is not only on Warfarin but 150mg of clopidogrel per day too which is also an anticoagulant Dan needs for his stents. However, as Dan has not heart problems (it was just the clot that caused the SCA - he questions whether as much Clopidogrel is needed. As a higher INR would be better without as much clop - if that makes sense. He has taken full bloods to run tests but rightly said that wouldn't change the decision it would just give a better picture. He is going to talk to his colleagues too as he said Dan is not a case that should just be lumped with others with not such high results - but he is asking opinions of others who have people on the same mix of meds as Dan. He is most likely going to add in Hydroxychloroquine (which I'd never heard of.. So he will be writing to us with all of the findings and his recommendations of changes that need to be made. We're flying tomorrow to go on holiday (orly 4 hour flight - but he said it would be fine... So I feel good for having seen him but obviously a little anxious. Apart from Dan's brain injury (with was the result of the 8 minutes he went without any CPR) Dan is always fine - always feels fine, exercises at the gym with no problem and we walk the dog most days for 8-10 km so he is doing well.. I will keep you posted of his final recommendations but am grateful for any further advice! Thanks x

  • Great, Im so glad you went too. The Hydroxychloroquine is also known as Plaquenil which I think I mentioned to you way back at the beginning. Its a standard treatment for HS. Please see our post on it under pinned posts so that you get there right "kind". many people find that the generic prescribed by most GP's gives side effects and does not give the benefits of the ole "Plaquenil".

    Please let us know how Dan is doing. x

  • This is very fortunate, I am happy for his recovery, it seems very positive👍😃

  • My b2g g was also >532

    B2gm was 42

    Plus igg cardiopilin 258

    Igm cardiopilin 18

    And LA +be

  • Kirsten, any thing new to report back it's been about 4 months? Hope all is well!

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