My anticoagulation team have really been struggling to stabilise my INR despite using a coaguchek self monitoring machine daily, 3 visits to the hospital a week and trying a Vitamin K supplement. They are now considering moving me from Warfarin to Acenocoumarol. I usually trust the team and would do what they advise immediately but I have been given a couple of days to think about it, as we are meeting to discuss the idea on Wed.
I just have the words ‘it’s got to be Warfarin for APS’ ringing in my ears. Do any of you have any experience of Acenocoumarol or know how similar it is to warfarin? I am sure my doctors will go through it all on Wed but it would be good to hear from any patients that have been on it.
Thanks
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Clairey25
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Is there any reason they aren’t going to lovenox, Fragmin, the low molecular weight heparin(s)- LMWH? I don’t know anything about acenocoumaril, sorry.
Hi it might be an idea to discuss all possible options with your main Hughes Syndrome/APS consultant, different drugs suit different people. It is important that you have a doctor who fully understands your condition. MaryF
I was put on acenocoumarol (sinthrom) 3 years ago after having my daughter. Before having her I had been unstable on warfarin and losing so much hair it was scary! Professor Cohen at ucl put me on it. I self test twice a week and most of the time I am within range and have not suffered any side effects on it. My inr used to swing between 1 and 7 on warfarin, but it’s usually between 3-4 now.
The only thing I’ve found is that most doctors haven’t heard of it, but it hasn’t caused problems. It’s very much like warfarin. I still take fragmin if I go below 3.
Thanks for your response that sounds really encouraging. My nurse specialist did say that it was quite unusual and that most doctors wouldn’t have heard of it! As that is true for APS too I am not too worried about that as long as it works. Really glad it has worked for you. Has given me lots to think about. Was there a reason that they didn’t put you on Clexane ? It seems most people on here that can’t stabilise on warfarin just change to permanent Clexane.
Professor Cohen has said that long term fragmin increases the risk of osteoporosis and I think it’s because they can’t reverse the effect of it if something happened. It’s so good that you trust your team, it’s so important to know they are doing the best for you.
It’s much nicer to take tablets rather than inject everyday, so I was happy to try it and is worked for me. It only comes in 1mg tablets.
I took Sintrom for four years while living in Spain and managed to stay in range. I was also able to take Paracetamol and various antibiotics without any problem with my INR. However, since moving to the States over a year ago they haven’t heard of Sintrom and I was put on Warfarin. The change has been a real challenge as I cannot keep within range and Paracetamol and antibiotics really affect my INR. I was told in Spain that Sintrom had a shorter half life than Warfarin.
Hi everyone just a quick update. Have seen my specialists who were great. Seems Acenocoumarol is very similar pharmaceutically to Warfarin but has a shorter half life (stays in your system for less time) which helps as adjustments to dosage have a quicker effect. My Anticoagulation team say it is one of those drugs that works brilliantly for some people with particularly high antibody levels.
Has Same side effects etc as warfarin and still need to take INR regularly. However it seems it’s very difficult to get hold of in the UK and it’s very expensive. We have agreed that I will give it a try to see if it helps but now we have to find a way of sourcing it, which may not be easy apparently. Will let you know if I actually manage to get hold of it.
Have been on acenocoumarol for a few months now. It hasn’t stabilised my INR but has improved the situation. It has a much shorter half life than warfarin and so if INR is out of range you can get back in range by the next day.
Also because symptoms are there for a shorter time you seem to feel better again quicker. Still having to make lots of hospital trips for bloods but definitely having more good days than bad since being on it.
It continues to be tricky to get hold of from the pharmacy but I have now learnt to stock pile it and use independent pharmacy so they can go straight to supplier.
Although it hasn’t necessarily achieved what we set out to. I am still glad I changed to it.
Perhaps try a different pharmacy? I’m in the UK and I’ve been on it for around 2 1/2 years as I can’t tolerate Warfarin.
My Pharmacy keeps it in stock for me as they know I’m a regular patient, they’ve never had any issues obtaining it! Yes it’s unusual compared to Warfarin in the UK but I’ve never had any real issues filling my prescription.
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