Apixaban for antithrombin iii deficiency

[Springbunny]

I have antithrombin iii deficiency and I’ve been on Warfarin for 20 years to prevent DVT.

I have never had DVT but my mother and my two aunties had pulmonary embolism.

I recently experienced abnormally heavy period and I had to have blood transfusion.

My doctor suggested to stop taking warfarin as I have never had DVT but I told I would feel scared to think about the risk of DVT as I have seen my mother and my aunties cases.

I was referred to a hematologist and he suggested to switch warfarin to Apixaban because of the low risk of bleeding. He would recommend low dosage (2.5g) because of long time use.

I tried to get info of the case like me; Apixaban for antithrombin deficiency but not much success.

I would like to hear their experiences if there is anyone using Apixaban for antithrombin deficiency.

[maejane]

I also have AT3 (4th generation)but protocol where I live is if you've never had a clot you don't need blood thinners? My son for one is a prime example. He was tested when he was 13 and came back positive at a reading of 50% (normal readings are 70-120%) and was then genetic tested like myself has a mutated gene, was told he won't be given treatment unless he has an episode of clotting. He has an alert card and letter that he carries, he injects low dose heparin when flying etc. And was told there are to much risks to taking blood thinners without clotting.

I have been on rivaroxaban since 2012 because I was allergic to warfarin and my previous drug phenindione was hard to resourse. There are alot of us on the new drugs which of course have there problems too. But if I have never clotted I would definitely not be taking these drugs. because you have the condition you may never have a clotting episode in your life. All in all its up to you and the medical advice given to you by the professionals.

[Springbunny in reply to maejane]

Thank you for your reply.

Yes, my consultant told me not taking any blood thinners is one option when I had very heavy period.

I had a surgery 8 years ago for thyroid. Before the surgery, I had to take some hormone medicine to reduce the size of thyroid. While I was taking the hormone, doctor put me on warfarin because the hormone might cause blood clots.

Since then I have been taking warfarin as precaution.

I saw a consultant when I had heavy period and he told me I can stop taking warfarin.

I was shocked when the consultant told me that. I have given up having children even if we really wanted to have because of warfarin. I cried a lot because I am too old to have one now.

Anyway, I told my consultant I would feel scared without any precaution because I have seen my mother and aunties had DVT and my mum had pulmonary embolism and nearly died.

He concerned about my feeling and suggested to switch warfarin to Apixaban which is less risk of bleeding.

[maejane in reply to Springbunny]

Well it sounds as if you've made up your mind.

I've had 2 submassive PE and almost died the first time 1997. I was only on blood thinners for 6 months. it wasn't until my mum had 2 episodes of PE within a year in 2003 that they decided to test our blood for conditions. So in 2004 I was also tested and came back positive for AT3 I refused to go on any blood thinners because I hated them, but because I had such a major episode they recommended it, I said no and then in 2009 I had my 2nd episode of numerous PE in both lungs and stroke, my grandfather and great grandmother died due to blood clots they were secondary on their death certificates. But I hate blood thinners and would dearly love to come off them. I worry about my son and any children he has in the future, but hopefully this terrible condition will not be passed on to another generation.

[motorbike]

Yes I’m in the same boat , but Aixaban is fine . I take it twice a day

[Springbunny in reply to motorbike]

Thank you for the reply.

I will go for it.

[Tillyclot]

HI, discovered I had ATD in my teens and the family were investigated. After clotting episode, put onto warfarin and stayed on it for over 40 years. Managed two pregnancies (one a c section unplanned) and under went a hysterectomy for fibroid issues and heavy prolonged bleeding which led to anaemia all pre menopause. Warfarin kept me clot free but I did bleed and bruise badly on it. 18 mths ago, due to problems with self monitoring and my INR levels becoming not so stable, my haematologist and I decided to switch me to Apixaban. As our type of ATD is high risk, I am on 5mg twice a day and I am tolerating it very well. Biggest challenge was remembering to take it twice a day(I use a dosset box) at around the same time but the freedom of no more blood tests is a real bonus.

My gums used to bleed with warfarin and no longer do so and I feel confident with this medicine. I chose to go onto Apixaban as my drug of choice, my son with the same condition (aged 35)who has had both DVT and PE is on Rivaroxaban as once a day dose - he has also not experienced any problems here.

With regard to no antidote, these medicines have short half lives - they stay active in your body for shorter periods unlike warfarin so it's important to take them as directed.

I am assured by the various clinicians I have engaged with that if I had a problem with a bleed, they have interventions to stop bleeds if they had to. There are antidotes being developed for these meds and no doubt will be available in future.

I hope this helps - if you switch, make sure you update your alert card and keep it with you at all times and I have worn a Medic Alert bracelet forever as it's my reassurance if I have an accident.

Good luck with your decision.

[Tofino5]

I’ve been using apixiban for over 2 years and it’s a godsend for me. I had crippling migraines while on warfarin for 10 1/2 years, and now they are mostly gone. I love the freedom of no blood tests and I feel much safer on apixiban than I did on warfarin because of the half life. It has to be dosed twice a day because of that half life. Also there is an antidote now for apixiban.

I am triple positive with high titres, have had one DVT, and PEs.

Hope that is helpful.