Been on wargarin 14 years and over the weekend after a doppler scan they have confirmed 2 clots??? Dont understand how??

[emmadavies58]

Dont understand how i 2 clots one behind knee and one in thigh if i been on warfarin 14 years. All they have done it kept my inr in target but now i am very insecure of warfarin. I am factor v active every day so where have these come from x

[nissanjean]

Sorry to hear this.

What was your dose of warfarin?

What was the INR target range set at?

Have you been self testing?

If so did you have any INR checks carried out on venous blood?

Were/are you taking any medication that interacts with warfarin at any time?

[daisyd]

Hi I have Hughes syndrome (sticky blood ) maybe worth taking a look it is on this site.

My INR target range is between 3-4

Hope you get the Answers you need

[Amoobaa]

What was their response to this situation? Did they increase your dose? Did they give you clexane (heparin) injections (they can be more effective in some cases but they are also more expensive). Did they give you any indication or possible reasons why this might be happening? Have they given you compression stockings? Hope you're ok

[Kempsh0tt]

Yes, very worrying for you.

I can confirm these sort of things do happen - out of the blue! I was in range at the time, had to self inject heparin for a while after being discharged and my INR target was moved up from 2.5 to 3.5. That was almost a year ago, so far so good, but I'd been on Warfarin (I have AF - irregular heartbeat) for something like 16 years. Subject matter experts did though suspect my pacemaker - implanted three years ago - although rare, the connection has been made especially if the clot is near the unit left/right subclavian vein in the arm. Extreme exercise has also been cited as a cause.

As others have said, your Doctors will have checked your INR at the time and you should not be afraid of asking them to set out what/why they think it happened and more importantly what measures they have taken to prevent reoccurrence and why.

Good luck and hopefully if they have increased your INR target you'll be at less risk.

TC

[Pepsicoley]

Hi Emma

Your problem is much the same as my previous problem. I wrote about in a post a few days ago.

Warfarin (INR 3.5) was not working for me. I had quite a few DVT's and subsequent PE's while on warfarin.

I no longer take warfarin - I am now on Dalteparin/Fragman and although I still feel a bit washed out I can breathe quite well.

I hope that my post of a few days ago helps.

Annec

xxxxx

[jaykai]

Oh Emma how worrying for you, I myself have had a DVT and five PE. been taking warfarin for a year now and I have been told that I am suffering from Post Thrombotic Syndrome

and have to wear compression stockings.... I have a rather painful lumpy vein behind my knee and when I questioned this at the warfarin clinic I asked if it was possible it was a clot

to which I was told that I should not suffer any more blood clots.. Now after reading your blog, I realise that further clots are possible.... many thanks for sharing.. I and many other people will be thinking of you. I hope that you feel better soon, please keep us updated... much love hun....

[emmadavies58]

Thanks everyone. After writing this blog i am currently in hospital with yet another pe and 2 clots in leg even though im currently on warfarin. Im waiting to see blood expert monday. My inr is in range at 3.8 so they not sure where to go from hetr. Very insecure but hope they sort me soon. Keep you updated guys. They dont seem to botjeted as im in range. Im not so convinced xxx

[daisyd]

I am so sorry you have had more problems, it seems that you need a review by the Doctors, glad you are seeing the Doctors on Monday.

Hope you get better soon xx

[tk11]

Emma hope you get well soon, keep pushing for correct treatment for you x