Are the new oral anticoagulants suitable for patients with clotting disorders?

[success]

I have an genetic thrombotic disorder, have had one clot in the past and am interested in finding out how I may become eligible for one of the new oral anticoagulants. I have been advised to take life long anticoagulants and am on warfarin.

[Hidden]

Hi success,

I am presently going through this process and would advise you firstly to find out from your PCT where rivaroxaban is on the Red Drug List. If you have a problem finding this information out then please let me know and I'll research your PCT but will need to know who your PCT or the area where you live i.e. Norwich, Leeds, Manchester etc. Once you have that information you can move onto the next stage.

Cambridgeshire and Peterborough PCT has removed rivaroxaban from the Red Drug List.

Would be interested to hear from any other members who have asked to go onto rivaroaban and where they are in the process.

[maejane in reply to Hidden]

hi I have Antithrombin def had 2 episodes of PE in 1997 and again in 2009, only found out in 2004/5 about having AT, I was on warfarin for 6 months in 1997 and I had a really bad reaction to it but no one listened, but in 2009 my consultant listened and put me onto phenindione wish was great, but this year they really struggled to get a supply so in june this year I was put onto rivaroxaban/xarelto 20mg daily by my consultant in aberdeen, and my gp agreed. it has its problems and the worst thing is no antidote for bleeding if you have an accident or like i have a bleeding nose, so it has its drawbacks but the freedom of not having your inr checked etc, its touch wood worth it so far, hope this helps

[success in reply to maejane]

Would be grateful on any updates on how you are doing on this for AT deficiency. Am stable on warfarin but recent liver function tests under investigation. Also, younger member of the family with AT on warfarin and would like to see him benefit from prevention of clots without the rigour of monitoring.

Ant side effects, interactions, general wellbeing noted?

[maejane in reply to success]

hi I have been on rivaroxaban since june, and have to see my consultant every 6 months, I seen him last week and to be honest there isnt alot of patients on it, we are still test subjects for long term use, but he did say because I have a rare clotting disorder they really dont know how well its working and had my bloods taken again 1. A kidney and liver function test 2.full blood count and 3. blood clotting test and I have been recalled to see him next month so I dont know why, so will find out if there is any problems, This drug works over 24hours so you can never forget to take it, ok you dont have inr tests you can eat and drink without interactions, but there is side effects just like any other drug similar to warfarin, to be quite truthful I would prefer to be on my old drug phenindione and self test as I knew it was doing its job, I dont know anyone else on rivaroxaban but I will update when I have been to see my consultant in 3 weeks. how old is your younger member of the family and can I ask why they are on warfarin, as I have passed AT III down to my son who is 16 and is on no medication unless flying, bed ridden etc?

[success in reply to maejane]

HI

Thanks for the update and will look forward to hearing how your review goes with the consultant.

My son was diagnosed with AT at birth. He was not anticoagulated and at 18 developed a DVT and PE. Has been on warfarin ever since, self tests and manages. To date, no further events and pretty stable on warfarin. We were given the choice to start him on warfarin in his teens as a preventative measure but he didn't want to do this due to demands of testing and couldn't see benefit when he hadn't had any problems. Our family history of clotting in teens and early twenties is high - all members with AT have had a first episode between ages of 15 - 30. The exception to this is a younger member who had a cerebral clot at around 3 years. Made a full recovery. and is anticoagulated. Glad to hear your son is medicating at high risk times. My son's clot developed after two very long car journeys and probable lack of hydration due to having a very party led weekend. Apparently, it's very important not to become dehydrated with this condition.

I do hope in time that the New orals may be appropriate for AT patients, less demanding than warfarin but as in my case having taken it for 40 years- it's doing it's job for my son and I

[kcphelps in reply to Hidden]

Hi, I'm recovering from my 3rd dvt. I started on coumadin, was advised to go to Xarelto, now my doctor told me that Xarelto is very bad for the liver and put me on Eliquis.

Luck!

[Hidden]

Hi maejane

Thank you so much for the information and many members to ACE community will be pleased to read your comments. Is it possible you can tell me if you of had any problems charging from phenindone to rivaroxaban no matter how small. This information will help so many other members who will be thinking about taking rivaroxaban.

It appears that many medical professionals are under the impression that there is no antidote but I have been carrying out research and there is a number of medical papers on the internet that "Prothrombin Comlex Concentrate can reverse the anticoagulant effects of rivaroxaban in health adults. I will email ACE to see if we can get more information on this very important point as we need to known now!!

Please keep us informed on how you are getting on with rivaroxaban

[maejane in reply to Hidden]

you are right my Consultant has told me they have something to reverse rivaroxaban, only been on it for 6 months so far so here goes.....

[Lynneiow]

I have been told that the new anti coagulant drugs have not been licenced for long term use. Is this correct? I will be on Warfarin for life, so would love to know if there is an alternative to this.

[darksteele]

No, one has been licenced for DVT and PE long term which is rivaroxaban

[SongofSongs]

I have recently changed from warfarin to rivaroxaban, but I am having trouble with side effects such as nausea, giddiness etc. I need to give it a bit longer to see if I can settle down with it.

[maejane in reply to SongofSongs]

Hi I also had these side effects plus extra like headaches that wouldn't go away even with paracetamol, weigh gain etc, but it does settle, but if it doesn't go back to your consultant don't put up with it, good luck