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Another DVT while on Warfarin
Started by Kerri
Posted: November 2, 2010 at 20:40
Is it possible to get another dvt while on warfarin. I had my first clot about 2 months ago in my left calf, but now am having pain in my right.
I dont think it is due to using the other leg more as the pain from my original dvt has subsided a while ago.
My INR has not been stable since starting warfarin....
Any thoughts??
Thanks, take care everyone :)
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Re: Another DVT while on Warfarin
Reply #1 by RACH
Posted: November 2, 2010 at 21:19
I don't think it is possible Kerri but mention it to your doctor or nurse and try not to panic! hope your well
Rach
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Re: Another DVT while on Warfarin
Reply #2 by Stephanie
Posted: November 2, 2010 at 22:43
I had major swelling after leaving the hospital, and my doctor was
afraid I had a clot that we missed. He did another scan and found no
new clot. I asked "what would happen if I was clotting while on
Warfarin" and he said that it is HIGHLY unlikely for it to happen. I
have read something about "if you clot while on thinners", but I don't
know if I believe it, and I don't want to pass on false information.

If you are like me, and you feel a pain, you over think it and make up
worse case scenarios in your head (especially now after being
diagnosed with something as a DVT). Talk to your doctor and try to
relax.
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Re: Another DVT while on Warfarin
Reply #3 by RachS
Posted: November 3, 2010 at 07:31
Hi,

Thanks for your posts guys. Kerri, I am experiencing exactly the same thing as you.
I fractured my foot almost 6 weeks ago and about 4 weeks ago was diagnosed with
a DVT in the leg (calf) of my injured foot. I have been on warfarin for about 3 and a
half weeks, and my levels are still not stable.

About 3 days ago I started experiencing the same kind of feeling in my other
(right) calf, and the last couple of days it seems to have gotten worse (still not as
bad as the one in my left leg, but that went on for over a week before it was
diagnosed). I'm not usually over paranoid about this kind of stuff, but the pain is
exactly the same as when I first had the DVT before. And you don't ever forget that
feeling!

Anyway, I spoke to a few healthcare professionals and they too said it is highly
unlikely to get another clot whilst being on warfarin, but not impossible. Basically,
you'd have to be very unlucky (which I thought would certainly be me! judging from
the past couple of months I've had!) So I went to get an ultrasound of both legs
today, and it appears that the clot is still in the left leg (the injured one), but not in
the right- where all the pain is coming from. I am so confused!!

Of course, I am happy that I have been told that it is not a clot...but I'm not
convinced. I have done nothing else that may have caused it (i.e. exercised too much
etc.)...So I'm really not sure. Does anyone know if it is it possible for a DVT to go
undetected on an ultrasound if it's in its early stages? A doctor did say that if it
was a DVT, and I feel pain, then a clot would be there...so I guess it must be
nothing...

Has anyone experienced an unreliable ultrasound before?

I think I'll see how I go. If the pain worsens and continues on for over a week, I
think I may go back to the hospital. They'll probably think I'm nuts! lol! But then
again, when I questioned the pain in my left leg originally (and suggested that
perhaps it may be a DVT) I think they thought I was nuts-- a low and behold, I had
a DVT! Lucky for our intuition and gut feelings!

Thanks for listening. Any comments would be appreciated. x

:)

I was just wondering if
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Re: Another DVT while on Warfarin
Reply #4 by Claire
Posted: November 3, 2010 at 08:47
There are people on this site who have been on warfarin, with a therapeutic inr,
and have reclotted, so yes, it is possible , but uncommon and there is usually an
underlying clotting disorder that goes with it, that makes people resistant to
coumadin. I think anyone who's had a dvt, thinks the worst when they feel any
kind of pain or discomfort ( me included).

I had a dvt from knee to groin last August, 6 weeks later when I could walk
properly again & the pain & swelling went away, I started experiencing pain in
my left leg, so off I went to ER , they scanned it ( they only ever scanned my
right leg initially), there was a small clot in my groin and my inr was 2.8 !!, I still
believe to this day, that I got them both at the same time from my 2 long haul
flights I'd just returned from a few weeks earlier .
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Re: Another DVT while on Warfarin
Reply #5 by RACHS
Posted: November 3, 2010 at 10:37
Hi Claire,

Thanks for your post. Wow, I can't believe you had two! And that they didn't check
both legs initially! Did you get any pain in the left leg at all whilst you were
experiencing pain in your right? My INR was 2.6 only the other day, but I'm
guessing from your story that that doesn't mean I'm in the all clear.

I know that people may think I'm over reacting, but the feeling is so damn similar
to before and I've done nothing for it to be this way. My foot is still not 100%, so I
am spending a lot of time in bed (catching up on my uni work) and not moving
around all that much. So it really wouldn't surprise me if I had another one, even
though I am on warfarin. But... the ultrasound was clear... So I guess that means
everything is ok and it must all just be in my head! lol!

Nonetheless, if it's still like this in another week's time--I'm definitely going to go
back and get it checked again (even if they think I'm being a paranoid freak!). I've
trusted my gut before, and I shall trust it again if need be! lol~

Thanks for your input, Claire.
:)


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Re: Another DVT while on Warfarin
Reply #6 by Adrian
Posted: November 3, 2010 at 12:25
Hello everyone, sad, but glad to see that we are not alone in this tough condition. I feel that I have developed another dvt in my right leg after having one diagnosed in my left calf 2 weeks ago from a bad foot sprain. I had the right checked a week++ ago, and they found nothing. But as of 5 days ago, I am feeling the same sensations as my left, but not near the pain. I am noticing varicose veins showing in the back of my right knee after standing for a while, and numbness starts to happen too. My doctor told me that even if I did have another--it would not change anything because I am already on warfarin, and my numbers are getting to where they should be. This is a very tough and stressful situation and we just need to stay strong and positive. I wish the best of luck to everyone and I'm sure we will all see each other over and over on this site. Be well, adrian
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Re: Another DVT while on Warfarin
Reply #7 by Stephanie
Posted: November 3, 2010 at 12:43
I'm honestly relieved to see that I'm not the only one who has thought
that they developed another clot on Warfarin. Luckily, I was cleared
and the discomfort was from over doing it.

I really hope you aren't clotting while on the Warfarin, keep us all
updated on your treatment.
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Re: Another DVT while on Warfarin
Reply #8 by RachS
Posted: November 3, 2010 at 12:55
Hi Adrian,

Thank you for your message. Yes, it is reassuring and somewhat comforting
knowing that there are others out there going through the same thing. It's also nice
to get opinions and stories off people who have been in similar situations, because
this is something you don't usually get when you visit your healthcare professional.

Yeah, it sounds like you might have another clot in your other leg. Have you had an
ultrasound? You know, every expert's opinion is different, but when I asked my
doctor 'If I did have another DVT, what would it mean?'. He said it wouldn't be very
good news, and that I may have to get it drained (or something?) I was a bit
confused about what he meant, but didn't follow up with questions when I was told
it wasn't a DVT.

I think that although the INR levels are important, I'm not sure whether they are the
be-all-and-end-all, and if you were diagnosed with numerous clots, they may
need to raise your warfarin and/or put you on some different medication. So I'd
follow that up if I were you. Perhaps get a second opinion or see a specialist?
Especially if you are still concerned and still in pain. I would push for an ultrasound
at the very least.

And if that comes up clear, then you'll be in exactly the same situation as me-
Utterly clueless and with no idea as to what the hell is causing this pain! lol!

Staying strong and positive,
RachS.
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Re: Another DVT while on Warfarin
Reply #9 by RachS
Posted: November 3, 2010 at 13:02
Thanks, Stephanie!

My fingers are crossed that the pain subsides over the next few days, and I can
stop worrying that it might be a DVT! I probably just overdid it walking from my
bedroom to the bathroom and back! (A whole 10 steps! lol!) Nah, not really sure
what may be causing it... We'll just have to wait and see I guess!

Thanks again for your response! Will keep you posted! :)




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Re: Another DVT while on Warfarin
Reply #10 by Claire
Posted: November 3, 2010 at 18:51
My right leg was soooo painful that I didnt notice any pain in my left, My 1st hematologist agreed that it was most likely that I got them both on the flights. I'll never know !
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Re: Another DVT while on Warfarin
Reply #11 by Sharon
Posted: November 3, 2010 at 23:10
Despite what a Dr. would have you believe, an ultrasound is not 100% accurate. I went to the ER 3 weeks ago & told them I thought I had a DVT (you're right..you don't forget the pain & I had had one 13 years previously). Long story short, the scan came back negative. Next day I strongly insisted my Dr. order a d dimer test (blood test) and it came back positive. At that point she sent me for a second scan at a different location. The second scan (only 48 hours later) showed a huge clot.

If you really believe you have a problem - you need to advocate for yourself and insist more be done. The life you save will be your own!
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Re: Another DVT while on Warfarin
Reply #12 by RachS
Posted: November 4, 2010 at 02:06
Thanks for sharing that, Sharon.

Wow! I can't believe the first ultrasound didn't show it! That is so good to know.
Just in case the pain does not go away and gets worse or something, at least can
say 'I know' someone who had a DVT not show up in an initial ultrasound, and
perhaps suggest further tests. Mind you, I don't think a d dimer test would be
suitable as it would probably come back positive anyway due to the clot in my left
leg which we all know is there.

The pain does seem to be a little better today (mind you it's only the morning and I
haven't really moved from my bed all day) but nonetheless, I'm trying to stay
positive and hope for the best.

That is so true about advocating for yourself and taking charge of your health. I've
seen too many people hand themselves entirely over to medical staff, only to be let
down, mistreated, misdiagnosed, or completely forgotten about. I think a lot can be
said for understanding your own body, trusting your intuition, and taking a
proactive stand for more informative and efficient health care.

Thanks again for your input, Sharon. I hope you are now in the all clear, and living a
healthy and happy life. :)
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Re: Another DVT while on Warfarin
Reply #13 by Kerri
Posted: November 4, 2010 at 06:28
Thanks for your input :) I know you don't forget the pain alright! Am going to the
doctor tomorrow and will tell her I want an ultrasound! It is very similar to my
first one. Take care and good luck!
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Re: Another DVT while on Warfarin
Reply #14 by RachS
Posted: November 4, 2010 at 12:31
Awesome, Kerri! Good luck too! Let us know how it goes! : )

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Re: Another DVT while on Warfarin
Reply #15 by Sharon
Posted: November 5, 2010 at 01:06
Glad to be of help to someone & really glad to have found somewhere to share all these stories.

I'm not sure that others that have not been through some of this really understand. After 3 weeks I am much better but not 100%. I have improved from pain to just an achiness in my leg but it is actually more swollen than when first diagnosised. Can't seem to get work or my family to understand I need to sit more. I look healthy & I've never been one to sit/whine therefore everyone just assumes I'm back to normal. But I'm not.

Best of luck to all of you
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Re: Another DVT while on Warfarin
Reply #16 by Barbara
Posted: November 6, 2010 at 17:42
If you are having pain in anyone of your legs even if you're on warfarin make sure to have another doppler (ultrasound) performed - not just on your leg but on your iliac vein and IVC which are higher up on your body - this could be causing pain/swelling in your leg. It happened to me. I had swelling in both legs but first detected clots in my left - a doppler was performed on the right side but not to the extent as they did on the left since it is not "common" to get clots on right side. Anyway...several days later also while on warafarin and within range - I began getting a lot of pain and swelling again. That's when I went to another hospital and discovered clots in my IVC and iliac on my right side. I'm on warafarin and have a Johnson and Johnson brand filter (not Greenfield).
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Re: Another DVT while on Warfarin
Reply #17 by RachS
Posted: November 9, 2010

Sharon, Thank you for sharing your story. I hope you recover soon and that your
family understands that you need rest in the meantime. It can be a very hard thing
for others to understand I think, especially when you look fine on the outside. It's
just one of those things I guess, you don't know what its like until you have been
there yourself. That's what makes these types of forums so special and important.
It's nice to actually speak to people who understand and have similar stories of
there own to share.

Barbara, thank you for sharing your story. That is really good to know that not only
the leg should be checked with the ultrasound. It's sounds like you were very lucky
they found the clots the second time. Especially seeing as they were much further
up your body. Sound like a very close call! Did you have any other symptoms (aside
from the swelling in your leg) in any other parts of your body?

As for my own pain in my right leg, it went away for a few days, but today it feels
like it's back again. So I don't know, maybe it is just muscle strain. It may also be
because I was wearing the pressure stocking on my right leg for a week or so and
when I was told there wasn't a clot in my right leg and not to bother wearing it, I
took it off. Now, after a few days of it being off it's starting to hurt again.... So I just
don't know! Maybe it's just all in my head! lol!

Anyway, thanks again everyone for your comments. Keep in touch! :)

Rachael.
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Re: Another DVT while on Warfarin
Reply #18 by Adrian
Posted: November 9, 2010 at 03:34
Hey everyone, Hope everyone is recovering well and beating this. I was stuck with another clot in my right leg. It is actually worse than my first in my left calf because it is higher and elevation is not fully stopping the pain and discomfort. At least with my left calf elevation made it better. My INR took about 10 days to get over 2.3 and was recently at almost 4, I go again friday to check how my lowered dose will do. the pain in my left calf is almost completely gone for the exception of minor cramps and a little burn, but my right has been pretty crummy. Just have to tough it out. Has anyone had an experience where the second one was worse than the first even while on thinners? Be well everyone!!! Bottoms up on my Odouls!!!!
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Re: Another DVT while on Warfarin
Reply #19 by Adrian
Posted: November 9, 2010 at 03:36
PS---Thank you RachS for your kind words and support!! Best wishes to you, Adrian
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