Stay on Warfarin or not?
Posted , 9 users are following.
I fell in 2010. I went for a doppler a few weeks later and had two clotts in my calf.
I was put on warfarin for 6 months, then taken off WITHOUT another doppler. 16 months later I had a PE. I then had another doppler and showed I still had the two clots in my leg. I was put back on warfarin. Clots are now gone. However, they now want me on warfarin the rest of my life.
I had genetic testing. Which was negative. I guess my question is: "If" another doppler was done, I'd probably would've be on warfarin a few extra months and been done with meds once the clotts were gone. So, now that my clotts are gone, does this justify being on meds the rest of my life? It is easier for doctors to just keep me on them.
0 likes, 12 replies
TGrove MikeClot
Posted
I had one PE in late 2016. I also tested negative for genetic factors. I chose to stay on warfarin for life to be safe. I have a seven year old, and I don't want to go through the hell of another PE. Studies show if you've had one (for any reason) there's a good chance another one will come at some point. You might be a lucky one, and it will never happen, but I'm not willing to take that chance. I feel just fine on the warfarin, so personally I don't think it's a big deal. However it's everybody's personal choice and preference, depending on risk and how you feel on the thinners.
ann55375 MikeClot
Posted
i too had dvt, several years later p.e. from nowhere, apart i suspect from two months previous disc surgery. pes are frightening and the cat scan is very conclusive. i have also been told to stay on warfarin for life. a shock but if it helps prevent another then worth it. unfortunately depression set in and the medications for it are not all compatible with warfarin. i do find the diet restrictions a nuisance but many people are on it and manage fine. i dont think dr would keep you on it for his convenience, i think its because it precludes another attack.
Supertractorman MikeClot
Posted
I had P.E. twice and was put on Blood Thinners for life and started with Rivaroxaban that gave me nose and ear bleeds, and am now on Apixaban tablets twice a day with no side effects, no blood testing to be done and no restrictions on diet. Suggest you talk to your Dr about these other medications as they are bringing out more now and I believe soon there will be some with an antidote to put your blood back to normal before an operation as currently I have to stop taking tablets 3 days before an op.
peter54321 MikeClot
Posted
Hi Mike,
I had one episode of PEs and was put on anticoagulants for life. From what I understand, the decision to cease treatment or continue for life is a judgment call based on risk. I suspect that is the basis for the decision you have experienced. I questioned the decision to keep me on them for life and asked if I could come off warfarin, but the statement ""it would be a very brave man that took you off your medication"" convinced my to stick with it.
HTH
Peter
p.s. I had bad experience with rivaroxaban, but tolerate warfarin fine.
marie48074 MikeClot
Posted
Had 2 PEs and a DVT in groin in Oct 2016. Never smoked. Not a couch potato. Had walked the world as owned a hiking tour company. Was put on Warfarin and after 6 months qualified for self monitoring. But stayed fatigued ALL the time. Decided to go to a doc who specializes in blood factors. After seeing a big patchwork of broken veins on inside calf of leg where the clots had begun, ordered an ultrasound. Found WHY I had clots: my artery was not staying fully open and the blood did not flow freely and pooled up where the broken veins were. This guy did an ABLATION on my leg and had the flap in the vein glued OPEN so the blood flowed and did not pool! That was the source of my clots! Stayed on Warfarin from then,Aug until Dec. Took me off and in 2 days the Wwarfarin was out of my system, my strength came back and I am on a 325mg aspirin daily. Had the D-dinmer bloodtest weekly for 4 weeks, then in one more month had it again. NO sign of a clot anywhere. will see him again in 4 weeks and will probably have a d-dimner every couple of months. I am a walking miracle. I even got to fly to Israel the month before I got off of it because he was so sure that the procedure took care of it. Check your calf to be sure your blood is flowing correctly through and not pooling up. sorry this is so long.
jen86183 MikeClot
Posted
Mike,
If you have two clots doctors automatically put you on an anticoagulant for life. I had a PE last June due to a hip op, I was put on apixaban for three months but, after a month I was really ill, bad headache, feeling really sick, could not stop shaking inside, losing more hair than normal, my nerves were shot. I went to see my GP and told him I was not taking the apixaban anymore, he offered warfarin which I refused. I take a lot of blood thinning supplements/food, drink water and most of all stay active.
You need to workout what is best for you, if you can live with the side effects, what is your general life like.
TGrove jen86183
Posted
Why refuse the warfarin?
jen86183 TGrove
Posted
A few reasons TGrove, you have to keep being tested, watch what you eat. At the end of the day all these drugs are dangerous. After being so ill with the apixaban, I was not prepared to damage myself anymore. My sister-in-law had a brain bleed (subdural haemorrhage) caused by warfarin, eventually your blood can become too weak.
I regret having my hip op, I had an echocardiogram in August and they put the clot down to the operation. Everyday I am aware I have to move frequently, drink water, and drink/eat things that keep the blood moving freely.
TGrove jen86183
Posted
The testing and diet seem way overblown to me. But to each his own. It's a personal choice.
MikeClot TGrove
Posted
As the original poster, the diet (VITAMIN K) thing never really affected me. The best for me is the home testing machine. No more going for blood tests and playing phone tag with my doctor. Sometimes waiting almost week+++ for my results. I am able to make my own warfarin adjustments as needed.
Just wish I had a doppler done before they took me off the warfarin.
graceCO jen86183
Posted
I was also put on anticoagulants for life after one PE episode. As Peter said, it's a judgment call doctors make, based on your individual risk. Although I have no underlying issues that caused the clot after testing, my mother had DVTs and that was factored into my overall risk. My hematologist says I have a 20% chance of a blood clot recurrence and a 60% chance it's another PE.
I was started on Xarelto, but had terrible side effects and was switched to low dose (2.5mg) aphixaban and now I feel fine. At 67, I don't want to take the chance of throwing another PE that I may not survive. I will, however, keep checking in with my doctor every year to see what new research may impact my risk profile. If in doubt about a doctor's recommendation, I think it's always wise to get another opinion from a specialist.
jimmiego MikeClot
Posted
It took me a few PE's before I realized I would have to be on warfarin for life. You eventually learn to live with it. I just don't fool around with it. A lot of people die on the first PE. I feel very lucky to still be alive and standing. I have had 7 PE's.