Warfarin resistant?

[Squeezer]

Hi,

Has anyone been told they are warfarin resistant? I'm interested to know how this conclusion was reached and what happened with APS treatment afterwards.

Thanks

[Lure2]

I have never heard of it. But the hematologist took some bloodsamples on me before I started warfarin. I am not a doctor. Could you ask a doctor?

Best wishes from Kerstin in Stockholm

[Squeezer]

Hi Kerstin,

GP is trying to get info from the Haematologist at the moment but just wondered if anyone else had experienced this.

[Manofmendip]

Hello Squeezer

I haven't heard of this as such. However, after being on Warfarin for 7 years I started to get a lot of my symptoms back, even though my INR was on target. Prof Hughes switched me to Fragmin injections and I feel much better.

Good luck with your GP.

Where are you from?

Dave

[Squeezer]

Hi Dave,

I'm in Nottingham but consultant is in Leicester. I know it's very rare but just wondering how the docs work out if whats happening is actually warfarin resistance. GP has just mentioned it as a possibility for what's happening i.e. INR dropping even though warfarin being stepped up each week. 18-21mg per day and INR between 1 and 1.1

[overnighthearingloss in reply to Squeezer]

I have heard that rats become resistant. Do you squeak?

Sorry .

[Squeezer in reply to overnighthearingloss]

That made me giggle!!

[Lure2 in reply to Squeezer]

How long time have you been on warfarin? Are you Lupus Anticoagulant (one of the antibodies pointing to APS)? I am on 5 mg/day but I also eat K-vit vegetables in a small amount every day. Hope you have an answer from someone who knows. Kerstin

[rach1081985]

hi iwas on warfrin for 5-6 yrs and didnt hav a problem on it........ jst really unstable inr`s bt suddenly out of blue my inr wldnt increasen my dose wld go up 2 no such luck......... docs did tests and there was warfrin in in my blood bt cldnt understand y it wasnt workin....... they referred me 2 my haemo who put me on rivaroxaban which i hav nw bn taking 4 nearly 2 yrs....... it seems like i was warfrin resistant .....hope this helps.

[Squeezer in reply to rach1081985]

Thanks for that. I'll have a read up about rivaroxaban.

[Lure2]

Hi, I am not a doctor but I think I have heard that rivaroxaban (? ) has not yet been approved for APS in all countries. I am from Sweden and on warfarin.

Dave has suggested Fragmin and this drug is used by many APS sufferers with a good result and it is also approved for APS.

Good luck from Kerstin in Stockholm

[Hidden]

I have been told that I am Warfarin resistant; this was the reason they stopped my treatment the first time because my dose was high but my INR unstable. My dose now is higher and still unstable so nit sure what will happen now.

[Lure2 in reply to Hidden]

Hi Lissylou,

Hope you have a real good APS-doctor. Hope you can discuss this with him. Have you tried to selftest?. It is anyway easier to control your APS if you selftest. Could Fragmin be something?

Best wishes to you. Kerstin

[Hidden in reply to Lure2]

Hi yes I'm under the care of Prof Hughes and a local team. I was on Fragmin initially which worked well but too expensive compared with Warfarin. Hospital will allow me to self test but its the cost that makes this prohibitive. I am srarting a new job in two weeks so I really want to get on and sort this. Random pain around my body not helpful either!

[Lure2 in reply to Hidden]

Hi Lissylou,

So sorry to hear that you must give up the Fragmin when it worked just fine. I know it cost a lot here in Sweden too. I am so lucky that I live in the Stockholm-aria as all people that can handle an Coaguecheque-machine do not have to pay for it.

I am also glad to hear that you are under the wings of Prof Hughes. Then the problem to get an APS-doctor does not exist.

Have you told him about your problems? Perhaps he could have something to suggest. Patiens Day on Wednesday though. Hope you can sort it out before you start your new job.

My best wishes to you from Kerstin

[Salty]

Squeezer, make sure you are not unknowingly taking in vitamin K, for example in an over the counter supplement. Eg viactiv, the chocolate calcium supplements also contain vitaminK. Also review a list of the foods high in VitaminK. Vitamin K is an antidote for warfarin.

[Squeezer]

Hi,

Thanks for your replies. Am still waiting to hear from consultant but pleased to say INR has risen a little- still not anywhere near in range but it's going in the right direction and hopefully will continue to do so this week by which time I hope the gp will have some advice from the hospital docs.

Thanks all.

[Lure2]

Hi, I am happy for you that it has risen a little. I do not know how long time you have been on it. In the beginning it can take som time before it settle.

Hoping for a positive answer from your Consultant.

Best wishes from Kerstin

[THEUNIQUELDY]

Not sure if it true resistance but for 40+ years no doctor has been able to regulate me on warfarin (IE change dose then either too low or too high, change again & same happens), even had a bleed once. Now I am on Xarelto 20 mg. daily without any problems or testing needed.

[APSmum]

Hi Squeezer, can I ask did you manage to find out anything further about warfarin resistance? Is there such a thing? I have a similar situation to yours at the moment inr remains at 2.0 despite increasing dose each week over the last few months. Now at 16 mg and puzzled as to why it doesn't seem to be working

[Squeezer in reply to APSmum]

Hi there,

No answers as yet- seeing the consultant next week. Yes, warfarin resistance does exist but it is very rare. INR went up from 1.1 suddenly to 2.5 with warfarin between 15mg and 21mg a day. That was just a few days ago so waiting til next week's test to see if it is still in range.

Seems like most people have lots of INR variation but this has been pretty extreme for months now and no one seems to have a clue why as there have been no changes to explain it.

It will be interesting to get the consultant's take on it all

[Lure2]

Hi. I know my hematologist took bloodsamples before she put me on Warfarin. I have been looking for them but I cannot find them just now.

Cheque CYP2C9 also with metabolism. But your doctor must be able to answer this question!

Try Fragmin but it is said to be expensive. Best wishes from Kerstin in Stockholm