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How long on blood thinners?
Started by Dharma
Posted: January 20, 2011 at 01:18
Hello everyone,

I've been reading these helpful post for a few months now. I haven't been able to figure out however if I will require blood thinners long term. I am 42 and developed a calf to groin blood clot from taking birth control pills. I have been on lovenox injections for 6 months now and wear the compression hose everyday. I have noticed a slight decrease in the swelling and I don't have any pain however by the end of everyday my leg is larger than the other and discolored. I am wondering if I will have to be on blood thinners for life? I don't have any clotting disorder and the reseason I got the clot in the first place is gone. I live in Alberta,Canada and we don't seem to be very proactive with treatment so blood thinners and waiting are my only options. I am seeing a hermatologist at the University of Alberta but he hasn't been very helpful with treatment or information.
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Re: How long on blood thinners?
Reply #1 by Deb
Posted: January 20, 2011 at 23:14
My clots were also from BC(I was 48 at the time). If you don't have any genetic issues and the BC pills are the cause( like me) you should be able to come off the coumadin. My event was in May 08 I was on coumadmin for a year and have been off it since. I do have PTS in my leg and it does have some residual clot but for the most part I am doing just fine.I still wear my knee sometimes when my leg bothers me.
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Re: How long on blood thinners?
Reply #2 by Dharma
Posted: January 21, 2011 at 10:05
Hi Deb,

Thank you for your positive response. That is great news. The hematologist I am seeing is very negative and seems to be telling me the worst case scenario but it doesn't make sense to be on thinners for life under the circumstances. Can I ask if your clot was in the groin area? That is where mine is and I think that is the concern.


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Re: How long on blood thinners?
Reply #3 by Mandy
Posted: January 21, 2011 at 16:31
In April 2010 I developed a DVT from my groin to my ankle in my left leg. I was 35 weeks pregnant at the time. Factor V runs in my family, and my proteins C and S were low due to the pregnancy. The clot came on instantaneously. The doctors told me it would take up to 9 months for the clot to dissolve and I would have pain and swelling for life. I was at first on heparin for a few days then switched to lovenox 90 twice daily. Some doctors told me to walk and not lay in bed, but if I did, my leg swelled even larger. Finally, I met the best Dr. He told me to stay in bed with my leg elevated high. I remained in the hospital for a month, the baby was delivered. By the time I left the hospital, from my knee down, the clot had dissolved. After being home for 6 weeks and mostly resting, I began running as I did before my pregnancy. I was running two to five miles five times a week. By the end of the run my left leg would have pain and slight swelling, but I continued to run. I was on coumadin and my INR was never regulated. In August I became pregnant again and went back on lovenox 40 once daily. I lost the baby in October. I had a doppler ultra sound in November and the hematologist told me the clot was completely gone, no residual damage. He took me completely off the lovenox and I do not have to be on any anticoagulants unless a situation arises that would warrant prophylaxis. I truly believe that the first half dissolving so quickly was a miracle. Dr's couldn't believe it. I think that the running helped me to refresh the vein and the rest of the clot to loosen and be removed. If you can, walk or run. When there is pain, elevate your leg. Treatment usually lasts for 6 months after the DVT. If it is your first DVT and it was brought on by an external event such as birth control, injury, or pregnancy, the six month period is standard, if you've had more than one, you may be on anticoagulants for life. Good luck, I wish you the best.
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Re: How long on blood thinners?
Reply #4 by Tom in Connecticut
Posted: January 21, 2011 at 20:57
Dharma,

Here is a link which gives some general overall guidance to length of Coumadin therapy based on causes of clot:

http://fvleiden.org/ask/09.html (scroll down to section which discusses "2001 recommendation for length of Coumadin Therapy". The doctor that wrote that is a leading blood clot specialist in the U.S.

Though you don't have any patient groups in Canada like the National Blood Clot Alliance in the U.S., you do have a healthcare group which may be able to answer specific questions for your area in regards to finding a specialist for a 2nd opinion. The link is: http://www.tigc.org/home.aspx

R/
Tom
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Re: How long on blood thinners?
Reply #5 by Deb
Posted: January 22, 2011 at 01:27
Yes mine were both groin to ankle one cleared up the other which was the first one and the one that caused the 2 PE's is the one with the residual clot...my last scan they told me the leg had created a couple new veins. If the end result after the gentic testing is birth control was the cause... then I can't see them keeping you coumadin for life. Most doctors don't want you on coumadin anylonger than needed. Now sometimes that may turn out to be for life ..but if you have no other reason for your clot...I would question that.
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Re: How long on blood thinners?
Reply #6 by Anita
Posted: January 23, 2011 at 01:07
I had DVT occur in Jan 2009. Very extensive as I had it for a month until discovered.
Groin to ankle and chronic as they called it. It was due to an accident I had in
December and being confined to bed waiting for an operation. I stayed on Warfarin
until October last year when my Hemotologist told me I can come off. So just under 2
years on blood thinners. They told me as the accident was the cause of the DVT there
was a reason and that did not mean I had to be on blood thinners for life. Due to my
family history of blood clots too is why I stayed so long on Warfarin. But now all
seems to be ok and glad to be off Warfarin. I still wear my compression stockings
though! and will stop wearing in July which will make 2 years of wearing them.
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Re: How long on blood thinners?
Reply #7 by Dharma
Posted: January 23, 2011 at 05:00
Thank you for the replies. It is so good to hear positive outcomes. Your stories are really inspiring. I've heard that exercise makes a big difference in recovering and I've been keeping pretty active but will increase that as well. I haven't taken warfarin and would rather avoid it if possible however the lovenox is expensive and can cause bone loss so I don't think it is a good longterm solution. Hopefully when I go for my next appointment in July I can come off of all blood thinners. Thank you for the link Tom that was really useful information. Mandy, Deb, and Anita your stories are so good to hear. I think we need more of these on here because they are few and far between. Thanks for sharing.

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Re: How long on blood thinners?
Reply #8 by Naomi
Posted: January 25, 2011 at 21:23
Hi there,

From my understanding, after your first clot, they will keep you on anticoagulant therapy from anywhere from 6 months to a year. If it is your second or subsequent clots (like myself) you will be on it for life.
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Re: How long on blood thinners?
Reply #9 by Dharma
Posted: January 26, 2011 at 06:35
Thank you Naomi that seems to be what I am reading and I hope it's true. I can't wait to be off of them. It seems that blood clots that are large seldom just go away however. Most stories that I am reading say that even if the clot dissolves it will dissolve the values with it (or damage the values) which means that the blood will no longer flow back up the leg. So do people have to wear compression socks for life (I'm ok with it if that's true) to avoid getting leg ulcers? I know there is no textbook answer but I am curious what others thought are on the matter.
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Re: How long on blood thinners?
Reply #10 by Naomi
Posted: January 26, 2011 at 16:04
Hi Dharma,

With my first clot in my left leg, it dissolved within 6 months completely and caused no permanent damage. I never wore compression stockings with that clot. After I got my second clot in the right leg this time, when they did the followup ultrasound of my right leg to see how it was breaking up after 6 months, they did a scan of the left leg as well for reference and everything was like it never happened.
My right leg on the other hand is not healing the same way. I'm 10 months from my initial diagnoses on the right leg and it's still partially occlusive and has caused permanent damage. I wouldnt say you HAVE to wear the stockings but I would say that they certainly do help, especially if you still have swelling. I personally still have about 1 inch swelling all through my upper thigh to my knee then it's about half inch through my calf. It probably will not ever go away now. I wear the stockings because they make my leg feel a little more protected and since I sit in an office all day for my job, it helps to keep the circulation going.
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Re: How long on blood thinners?
Reply #11 by Dharma
Posted: February 1, 2011 at 03:28
Thank you Naomi. I have been exercising a lot more lately and have noticed that it has been making quite a difference. It's either that or I am at the 6 month mark where the swelling starts to go down.

Sorry to read about your other leg and the swelling. It sure is a life changing experience.

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Re: How long on blood thinners?
Reply #12 by Valerie
Posted: April 18, 2012 at 16:55
I for have been on blood thinners (Coumidan)for about 14 years, now I
have a blood clot, due to a TIA in April, 1998. Have I been on blood
thinners too long or what?
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Re: How long on blood thinners?
Reply #13 by Ab
Posted: September 15, 2012 at 20:46
I developed a blood clot that moved from my knee to my deep femural and my
iliac vein. So this clot is pretty big I'm on blood thinners with no chage. There's
a procedure called, "Trellis Peripheral Infusion System at BryanLGH Medical
Cente". It seems very promissing.
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Re: How long on blood thinners?
Reply #14 by denise
Posted: October 2, 2013 at 14:42
My husband had neck surgery and in the days after surgery he didn't get up and move around. He ended up in the hospital with clots in his lungs, and was put on xarelto. He had a DVT ultrasound done before we left the hospital and they said there were no signs of clots. Upon discharge from the hospital, the Dr said he should stay on the thinners for 90 days, but our primary care physician wants to keep him on this drug for 6 month to a year. The thinners are making him very drowsy, and weak and he isn't able to take his anti-inflammatory medicine for his arthritis. He now has piriformis syndrome which is crippling him. Out of desperation one day he took one of his anti-imflammamatory medication and the pain from the piriformis syndrome was gone. He's been on the Xarelto for 4 months and he wants to quit taking the Xarelto so he can get back on his anti-inflammatory meds. Are there tests i should request to see if
he can safely stop this medicine? any advice will be greatly appreciated.
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Re: How long on blood thinners?
Reply #15 by Anna
Posted: February 26, 2014
I've been on 10mgs sometimes 15mgs of
Coumadin for 3yrs and I'll be on blood
thinners for the rest of my life due to me
having Lupus Anticoagulant Blood. How long
can a person live on blood thinners?
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