DVT deep vein thrombosis forum

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number of replies (47) - Page 1 of 3
Started by Donna - Edinburgh Scotland
Posted: March 4, 2008 at 21:43

I am due to come off warfrin 0n 20th March and can not wait to come of it, but I also feel very scared, I am due to get a load of blood test done 29th May to check for any clotting disorders is this the normal time to wait for these to be done (2 MONTHS). I was at my GP last week and told him my concerns but sometimes you are better talking to people like ourselves who have been through DVT etc, my leg is still really swollen and I am losing hope now that it may not return back to it's normal size as I had my DVT just under 6 months ago. Just wondered if anyone has any info and the same concerns.
Thanks Donna
Reply #1 by Pamela
Posted: March 4, 2008 at 22:03
Hi Donna,

I am in the same boat as you - I am due to come off the warfarin in May, and while I cannot wait, I am actually scared stiff, as it's my safety crutch! I have not been given the results of the tests done to determine the caue of my DVT, and so I am really worried... My leg is also still massively swollen, and that is really depressing. My DVT was in October.
Reply #2 by Ade
Posted: March 5, 2008 at 13:20
When I had a DVT in my arm 2 years ago, my forearm was swollen for months although the redness went. My consultant told me that out of 50 DVT's he sees, 49 are in the leg and 1 is in the arm. He said that it can take 2-3 years for the body to dissolve an extensive clot. My clot went from being a thick hard string-like vein which got thinner and thinner and now is just like a normal vein which doesn't have blood flowing through it. Maybe there is just one last narrowing which my body needs to clear before the flow comes back, but my consultant said that about 70% will dissolve completely and 30% will be there for life. Of those that stay, the veins and blood vessels enlarge and adapt to the increased flow caused by the blockage from the clot.
By the way, I have just had a PE which started from an ache in the calf. After talking to the thrombosis clinic, they informed me that if I have had a DVT in my leg, a made to fit compression stocking must be worn for 2 years after to minimise getting post thrombotic syndrome. Ask your GP or local thrombosis centre for advice.
Reply #3 by Katie
Posted: March 10, 2008 at 17:52
One thing that you must make sure you do is you do not just stop the Warfarin suddenly as this can be extremely dangerous. Decrease the amounts by 2mg each week until you are down to zero.
Reply #4 by PATRICIA gRAY
Posted: March 10, 2008 at 18:43
Katie--where did you find information that Warfarin should be decreased 2mg each week until down to zero?
Reply #5 by NB
Posted: March 10, 2008 at 20:34
two comments:

1. Donna - re the 2 month wait for the tests - yes, this is normal NHS practise, I think it varies a little at each clinic - I've heard anything from 6-8 weeks.

2. Katie - regarding your comment on gradual withdrawal of warfarin, this is not something that I have come across and is not regular UK NHS practise (I think Donna is UK based, so thats why that point is relevant, I cannot comment on what is done outside the UK). I've come of warfarin twice and both times came off straight away, without any gradual dosage. As warfarin takes a while to come out of the body, I guess it has a gradual withdrawal anyway. In any case, supposedly, the clot has gone by the time you are coming off warfarin, so there is no risk at that stage. If you have more information on why you think it is dangerous to come off straight away, please let us know.
Reply #6 by SUE C
Posted: March 10, 2008 at 21:16
Hi Donna
Im really confused at you having a specfic date to stop taking your meds how dos this work has your dr just decided that 6 months is long enough to have been taking warfarin or have you had a all clear ultra sound or something ,and regarding the tests im thinking you mean thrombphilla tests yes apparentley you have to wait till your off warfarin im really pleased your getting these tests because when ever i have mentioned these all i get is different replys depending on which dr i speak to one says yes they are very important the other says dont bother but hey ive had to fight and pay may i add for all the treatment ive had since this all started so that will probably be my next one.

Reply #7 by Sue
Posted: March 11, 2008 at 14:43
I had a DVT last April ans was on warfarin until November. Came off for the blood tests and like you was terrified. The results of my tests were good and showed I had no real risk factors (one slight abnormality that wasn't a concern)?
I also paid for a scan which showed no clots in either leg.
I am still very frightened by the whole experience but try to look on the positive side. I take Low dose asprin now, Ginko Biloba and drink loads of Cranberry. I also try to keep really hydrated as this appears to be a major factor (ie long flights/journeys and maybe why young healthy athletic sorts still get these damn things). I also went to see an holistic therapist which really helped. I didn't have to reduce the warfarin gradually just stopped on the given date.
It really is no wonder we are so scared when the treatment and advice varies so much. Hope all goes well for you.
Reply #8 by Sarah C
Posted: March 11, 2008 at 16:44
Hi Donna,
I am due to come off Warfarin at end April after 8 months - which I was also feeling a bit nervous about. However, both dr and inr nurse told me that providing my screening (due June)comes back clear, I am safer off the warfarin than on it at this stage/age in terms of the long term risks. So that cheered me up a bit!
Reply #9 by Donna R
Posted: March 11, 2008 at 20:05
I had a dvt in left leg last march,was on warfarin for 6months.went private to see a vascular consultant who didnt think it nessacery to do a scan,my leg is still very swollen and he told me the swelling may never go down as the dvt has left damage to the valves.I still wear compression tights and thank god im still alive.
Reply #10 by Diane
Posted: March 11, 2008 at 21:24
My docs in Seattle told me to end Coumadin one day and that was it...no tapering off at all. Fine with me because I had taken it for 6 months post-DVT, then off for 2 weeks and right into knee replacement surgery. Post knee replacement surgery I was kept on Coumadin for 3 months instead of the standard 6 weeks post joint replacement due to my DVT history.

Yes, it was all very scary to have a DVT and then submit to knee replacement 7 months later, but it turned out okay and now I can walk perfectly. The only thing I continue to be vigilant with is the wearing of my knee high support hose. They keep my legs looking a lot better (normal) than if I try to go without them and then find them a tad puffy at the end of an active day.
Reply #11 by Donna -Edinburgh
Posted: March 13, 2008 at 15:09
Thanks everyone for there replies, It is a week today when I take my last 7mgs of warfrin and my friends have organised a big night out for me to celebrate, can't wait but I do feel my confidence has been totally knocked.
Sue C I was given the date to stop treatment by my hemotologist I think by the sounds of it this is normal NHS practice.
Sue I also may take low dose asprin I have yet to decide, one question is does the cranberry make a difference and Im the same as you I think being de-hydrated has alot to do with DVT.
Anyway everyone thanks again and I will post soon and let you know how Im getting on. Keep well everyone

Reply #12 by Justin
Posted: March 14, 2008

I am also due to come off my last test is on the 18th I should be off by the 20th. Congrats too you,, and as for me I am excited as heck. good luck Donna I hope you live a long healthy life.

Reply #13 by Claire
Posted: March 14, 2008 at 13:51
Hi, I have been off Warfrin since 31st dec 07.I had DVT and Multiple PE's in July. The calf I had the DVT in is still 1 1/2 inches larger than the other. I have been told that sometimes the swelling never goes and that it is possible for the leg to remain that size. I can understand you being anxious Donna. Warfrin is safe to just stop as it has a 35hr half life ( you take 2mg and in 35 hrs 1mg is still present in the blood).
I am currently waiting on the results of the thrombophilia tests. My leg still gets tight and does ache now and again but reading these sites sounds like many people take a while to recover.
As for Cranberry I was told absolutely not to take any cranberry or cranberry products. I think this was due to its effect on warfrin but I dont know how it interacts? Does anyone know if its high in vitamin k or not? as that is the main source of conflict with warfrin.
Enjoy your weekend Donna!
Reply #14 by Donna
Posted: March 14, 2008 at 13:57
Thanks Justin and I hope you enjoy a long happy life to and everyone else.
Reply #15 by Patricia
Posted: March 17, 2008 at 17:20
For information on cranberry juice go to www.warfarinfo.com/cranberry.htm. from University of Colorado School of Pharmacy--studies indicate no interaction. Cases where there were problems--included one person drinking a gallon of cranberry joice daily and another 24 ounces of cranberry joice daily--appears moderate amount--8 oz daily--probably has no effect. Moderation and monitoring article indicates is best advice. Cranberry joice did not affect my INR, but I was only taking 6 oz daily.
Reply #16 by Shana
Posted: March 17, 2008 at 18:15
Hi Claire - I'm glad to here you are off Coumadin - how do you feel now? and do you wear compressions stockings? They have helped me, though I am still on Coumadin for another six months, if I come off of it I still plan on wearing them for the first two years as recommended.

I am also starting Nattokinase this week, along with my Coumadin, I ordered the one without the vitamin K, to help speed along my process of getting rid of the clot I have left in my thigh.

Also Donna, from what I have always understood is that Cranberry can make Coumadin work more, or thin your blood more, so I do not drink it. I do however drink Pomegranite juice daily and blueberry juice. But I also go to Catholic Mass and the bit of cranberry I have there doesn't hurt anything, like Patricia said, 6oz, a normal serving, should not hurt you, just don't drink a whole bottle!

Good luck to all of you - if you want to track my Nattokinase/Coumadin experiment I will be posting in the Natural therapies/Nattokinase threads.

Reply #17 by Shana
Posted: March 17, 2008 at 18:25
Ade -

the 70%/30% ratio you gave for clots healing, is that related to ones in the arm or just in general? Also, thank you for your answer that it can take sometimes 2 years or so to dissolve a clot.

My doctor, who granted is an internal medicine person at this point, just says I am on Coumadin for life if it's not cleared to a certain point in 1 yr. I thought that your body would of course keep trying to clean out the clot past that point, so maybe it just takes a while and you could stop blood thinners when that happens.

That is why I am starting Nattokinase. I am trying to clear this up before the 1 year mark this August. I had a DVT in my calf last August 2007, which is gone, and the thigh has two streams coming through currently, or re canalizing, so that's good. The small PE in my chest I have no idea what that is doing, but I feel fine, just a little sore on that side. I exercise daily, and am doing well.

Thank you for all of your posts!
Reply #18 by Shana
Posted: March 17, 2008 at 18:40
Also, coming off Coumadin, or just stopping in general is dangerous if you still need your blood to be thin for any reason, but from everything I have been reading, if your clot has healed to the point that thinning your blood isn't necessary anymore, then you just stop.

But just stopping it in general, and you actually still need the medication, well can make your body freak out a little bit, and if is clotted, well then there is a problem. Does that make sense?

I personally can't wait for the opportunity to stop taking Coumadin. I don't have any problems with it physically yet, I just mentally don't like it, and don't want to be a slave to it for the rest of my life if it isn't necessary.

I plan on seeing Naturopath soon to help me along the process after Coumadin (hopefully) and getting my body in order. I'm 43 and my body is going to start going through many changes that can affect things, blood things, menopause, hormone changes, etc. So all the help I can get the better!

Reply #19 by Claire
Posted: March 18, 2008 at 22:16
Hi Shana- I am feeling really well. I dont bother with a compression stocking as my clot was only behind my knee and down my calf. The doctor did not even suggest that I wear one. I rest it at work under my desk on a footstool and that helps as well. Plus Horsechestnut extract is good for circulation ( fortunately my friend is a herbalist) so I am taking that to help boost circulation.

I dont know of coumadin is a brand name for warfrin in the US as I havent heard of it in the UK?

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