DVT deep vein thrombosis forum

Welcome to the DVT deep vein thrombosis open discussion forum. Please feel free to start a new topic or reply to any existing topics. No need to register to use this forum. Just feel free to share your experiences of DVT.

One new option for people who have been diagnosed with a blood clot is Thrombolysis which uses medicines and devices to remove the blood clot. While not risk free, and not offered universally, the following doctors and institutions do offer this. If you think you may be interested, it is important to act quickly. Blood clots harden within the first several weeks, making it much more difficult to remove the clot. This procedure has risks and you should discuss with your doctors the tradeoffs for your particular situation.
Doctors and Hospitals offering Thrombolysis - Link to Doctors and Hospitals

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Posted by Louise
Last Reply October 19, 2016 at 08:58
Started September 3, 2009 at 16:33
I am a warfarin 'lifer' after suffering an extensive DVT whilst pregnant a year ago.
I take 7mg warfarin/day to keep my INR around 2.3-2.5.
I'd like to use other supplements to keep my INR up whilst reducing my warfarin. I'm aware that both Pycnogenol and Glucosamine are reported as raising INR 'naturally'. Has anyone out there experimented with taking either of these whilst on warfarin? If so, I would love to hear how you got on; what effects it had on your INR; if you had to reduce your warfarin dose etc.

I am self-monitoring and would ideally like to get to a position where I could take less warfarin and still keep my INR within the right range.

Take care everyone
Louise (UK)

11 replies...

Anyone else taking Xarelto?
Posted by Ken
Last Reply October 17, 2016 at 05:57
Started June 6, 2012 at 09:38
Dear All
Basically, two months ago, I had a knee operation and ended up with a DVT from ankle to my thigh in my same leg as the knee operation
I have been put on the new drug Xarelto which my Vascular Specialist (referred to him after surgeon detected DVT a fewdaysafter the Operation) says it cuts out the need to monitor blood level continously etc. and is a much improved medication for DVT
Does anyone else take this drug? Your experiences would be most appreciated
For sure it will not help the pain, as it is still awful when standing and even sitting in office etc.
I wear full length stockings, still have a swollen leg and what look like fluid allaround my knee surgery area, which the surgeon says he might drain, but I am reluctant to let him near me again!
I assume from the sit I have perhaps years of pain to come
Feedback welcomed
PS I go to gym, do not smoke and al the rest, but have to fly long haul twice a month - frightended to death I have to say also

249 replies...

Your Experiences with Post Thrombotic Syndrome
Posted by Sarah
Last Reply October 16, 2016 at 15:55
Started October 12, 2008 at 21:37
Hi All,
for those of you that have had your dvts for awhile, I'm curious about your experiences with PTS. I'm 8 months past my initial diagnosis. Lately I've been feeling some slight pain in my vein in the upper/inner thigh. I know this is where my clot was, and I know I have residual clot there as I never had thrombolysis. I had a follow up ultrasound 2 days ago to assess for reflux so I know this is not new clot. The discomfort is usually not too bad, and seems to subside after awhile. Have any of you all felt this as well? Not much swelling, just this vein stuff that I think is happening a little more often than it used to. If anyone cares to describe what PTS is like for them I would be intersted in hearing your stories.

97 replies...

Vein stent for chronic dvt
Posted by Lisa
Last Reply October 16, 2016 at 15:49
Started September 24, 2016 at 11:20
I recently had a spinal fusion in May of 2016. Two weeks later I developed a DVT
from my thigh to ankle. I was treated with Eloquis and compression stockings.
After 2 months the clots from the knee down dissolved, however from the knee
up the DVT remained partially occluded. I had severe swelling and pain and was
told by my Dr. that it would never dissolve and I would have to live with it. I
researched continuously and I found a group in Darien, Connecticut called the
Vascular Experts. After an extensive ultrasound it was discovered my clot
actually extended from my mid thigh to my abdomen. The. Dr. said it is
ABSOLUTELY TREATABLE! The Dr. recommended a VEIN STENT that could be
placed through A minimally invasive procedure. It has been 2 weeks since I had it
done and my swelling has reduced considerably and the pain has subsided. My
reason for posting this stems from reading about people who have been told they
must live with the chronic pain and possible PT... read more

1 replies...

Posted by DANIELLE
Last Reply October 15, 2016 at 20:07
Started February 23, 2011 at 18:05
Can anyone tell me if your periods have been so haevy while on blood thinners. I am going on day 4 and going threw super tampons every 2 hours plus noticing large clots. I know they told me my period would be heaver but my i cant take it!!!!

362 replies...

Posted by Dharma
Last Reply October 15, 2016 at 17:45
Started May 5, 2013 at 15:55
Just wondering if anyone is taking Xarelto instead of the other more common blood thinners. I was on Coumadin for several months after having my chronic (2 year old) dvt removed and stented and since January have been on xarelto. I feel 100% better on this newer blood thinner and I am symptom free. The Coumadin made me tired, bruised and caused severe hair loss. The switch to xarelto was my hematologist idea. He said it is as good at preventing clots as Coumadin. I know there is currently no known reversal agent but I live a pretty low risk lifestyle so for me it is worth the risk.

I have been on it everyday since January 2013 and plan on taking it for at least another year...maybe longer. Has anyone else been put on this for dvt prevention? If so have you had any side effects?

96 replies...

Blood clot in pelvis
Posted by Wiffle
Last Reply October 15, 2016 at 17:12
Started January 11, 2011 at 03:20
Has anyone had this?? I have a clot in the illiac vein extending into the vena cava discovered via CT scan for an unrelated issue a few weeks ago. I was on lovenox shots and now just warfarin. I'm going to a hematologist in a couple weeks but so far all the doctors I've talked to rarely heard of this?? It would be nice to know I'm not the only one with this :( I also have factor v leiden, heterogygeous. (I just had a baby 6 weeks ago so the ER doctor said this was most likely the cause of the clot)
Also, last night and today I started having pain in my left abdomen/ hip area. Has anyone had this? It's very bothersome and I am using a heating pad all day today. I talked with a nurse who thought it could be residual from the clot healing but who knows??
Trying to get out of this "woe-is-me" attitude...

29 replies...

Low White Blood Cell count on Warfarin
Posted by DHY
Last Reply October 12, 2016 at 03:15
Started August 15, 2009
Hi everyone, I recently had a Complete Blood count taken and it showed my white blood cell count had dropped to a bit below the normal range since I started on Warfarin. All other counts in the test came back ok.

Has anyone else noticed that their white blood cell count decreased whilst on Warfarin?

Thank you.

12 replies...

High altitude climbing/hiking
Posted by Derek
Last Reply October 11, 2016 at 18:20
Started January 17, 2010 at 07:37
Was wondering if anybody out there has done any hiking/climbing at high altitude 12,000 feet or more while being on coumadin/warfarin. If so did you experience any difficulties with circulation or did you sense any clotting symptoms. I have been on Warfarin for close to two years because of a left leg DVT and multiple PEs in the lungs. Before all of this I was an avid mountain climber/hiker - but since have done absolutely no climbing above 3,000 feet. Been a basket case and a nervous wreck to even think about getting back into climbing anything significant. Any feedback on this would be greatly appreciated.
Thank you

18 replies...

DVT in arm
Posted by Kitten19
Last Reply October 10, 2016 at 16:27
Started September 26, 2010 at 05:37
I was diagnosed with a dvt in my left armpit a few months ago. I am still on Warfarin, and the clot is not dissolving. I still get alot of pain when I use that arm alot, and I was wondering how long the pain and discomfort can last? I also notice that the arm is much weaker than my right. Will I regain all of my strength?

29 replies...

Joint Pain and Warfarin
Posted by Christel
Last Reply October 10, 2016 at 08:13
Started April 13, 2012 at 13:59
Hi, I have been taking Warfarin since December and I have like many tiredness, and often feeling really cold and shivery. I kinda accepted these side effects but I have been recently experiencing a lot of joint pain in knees and legs which has greatly reduced my mobility. (Am also waiting for a knee arthroscopy) I have just had blood tests back and i have been told I have very raised blood levels showing there is a inflammation and I will now have to see a rheumatologist asap. Before the injury i had and DVT last december I was very healthy and always on the move at work, ggoing to the gym sometimes and although not ultra sporty by any means i was fit and active at the least and had no joint issues.
Has anyone else experienced joint pain on Warfarin? Has anyone else had their medication changed from Warfarin as a result of joint inflammation? Would love to hear your experiences if this affected you. I am gathering info on this so that i can go to my doc armed with some potential ev... read more

87 replies...

DVT - Recovery time?
Posted by Colleen
Last Reply October 9, 2016 at 09:26
Started February 4, 2010 at 01:34
I was wondering how long it takes to completely recover (if possible) from DVT? I had ankle reconstruction surgery on 12/1/09 and by 1/15/10, my PT sent me directly to the ER due to extreme swelling (rock solid hard), redness in the calf, warm to the touch. The ultrasound indicated a clot from the bottom of my calf to above my groin close to my lung. I had to self-inject Lovenox 2x a day and started immediately on Coumadin. My PT/ INR levels are finally good at 2.4. But my leg isn't really improving. I know it hasn't been long but will I have permanent damage to the veins? I realize that a PE is still possible at this stage. Are there specialists out there other than a GP that can be consulted? Lots and lots of questions here... Just looking for some insight. Thank you.

28 replies...

Femoral vein bypass surgery
Posted by Don
Last Reply October 9, 2016 at 03:30
Started August 2, 2008
What does anyone know about using your Saphenous vein, cadaver or a synthetic to bypass the bad portion of vein that the clot is in and/or the valves are destroyed?
Anyone had this done, thinking about it or have any info on it?

12 replies...

Beginners Guide To Options To Have Career In M
Posted by boanjames
Last Reply October 8, 2016 at 06:52
Started October 8, 2016 at 06:52
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0 replies...

Multiple PEs (DVT), Coumadin Side Effects!!!
Posted by Jonathan A
Last Reply October 7, 2016 at 18:39
Started November 11, 2009 at 17:04

I'm a 23 year old male recently released from the hospital with multiple bilateral pulmonary emboli. Doctors said there was major blockage with infarction in both lungs. Massive clots.
Ultrasound revealed no additional clots in the legs which is good news.

Tests revealed genetic pre-disposals (Protein C deficient) so I'm a lifer for coumadin.

Started dose at 10mg per day, then slowly dropped to 7.5, then 5 and now at 2.5 after a week at my INR being over 4. I'm in the low 3s and have my next blood test here in about an hour. While I was in the hospital I was taking 2 lovenox injections per day. After 7 days of Lovenox they took me off and now I only take the coumadin. I've been on coumadin since Oct 21, its now Nov 11.

I started noticing some side effects, but after reading here and other sites I'm very concerned that nothing is going to help.

I have extreme lower back pain. Headaches every single day. Frontal lobe headaches that hurt worse when I cough. I have ... read more

22 replies...

Posted by Lia
Last Reply October 7, 2016 at 17:35
Started September 30, 2011 at 17:19
I was diagnosed with DVT last week, shortly after a gyne op. I saw a Gyne consultant today, to get results but also to discuss complications of the DVT.
I have now been prescribed Norethisterone (a progestogen) to relieve heavy periods; they were really heavy before, so likely to worsen with the Warfarin. I checked with the consultant that it was OK to take the Norethisterone with the Clexane and Warfarin, but the first thing I got to on the patient information leaflet was 'not to be taken if you have a history of DVT'.
He was the third Doctor to reccomend norethisterone, and I have double checked with my GP this afternoon, who confirmed it was OK to take, but it all seems extremely odd.
I wondered if anyone here with DVT was taking it?

3 replies...

Pains getting worse
Posted by shaun
Last Reply October 6, 2016 at 20:37
Started September 22, 2008 at 22:14
Hi again,
I havent posted for a while but seem to be getting no help from doctors and the hospital so thought id see what you guys think....
i had a dvt in june 07 and then they said a pe within a few days(but i dont remember them scanning me for that just continued injections for a month) because i drive for a living and id only been on a 2hr flight they decided i would stay on warfarin for life. Ive been in constant pain in my legs since...ive had another scan in january and they didnt find anything but they said the other clot was in the groin. i was back last week cos my leg 4cm bigger and i was in agony, more when i walked. they doc was useless, saying my inr was 2,5 so im safe but that ie prob got another clot but not worth scanning as im in the safe inr range. Ive now got a letter sayig the pain is due to extensive valvedamage due tot he clot... my problem now is im working but the driving is making it worse all the time but i need to earn as i have kids.. but i also wanna... read more

11 replies...

Long term use of clexane injection
Posted by Kellie Green
Last Reply October 6, 2016 at 13:11
Started May 18, 2008 at 18:49
Hi everyone
I have had 2 dvt's and a few years ago multiple clots in both lungs.
Warfarin was not agreeing with me and made me feel really ill - they were putting my dose higher and higher and my inr was not coming down.
I have now been on clexane for nearly 3 years with a 40mg injection daily - I just wondered if anyone else out there is on clexane injections long term as my haematologist does not know of anyone else in the same situation as me.
I am also on a high dose of calcium as one of the possible long term side effects (although they do not have enough research yet to benchmark) is osteophorosis - as im only 38 and have three kids needless to say I am quite concerned about the future - would be really grateful for anyones advice.
Incidentally, I have sporadic episodes of positive anitcardio lipins blood tests ?
Thanks - Kellie :-) x

104 replies...

Pradaxa and memory loss
Posted by Nye
Last Reply October 5, 2016 at 12:46
Started August 8, 2011 at 20:46
My husband started on Pradaxa six weeks ago after being on Coumadin for years for A-fib. He is experiencing short term memory loss and extreme fatique. Is anyone experiencing these or similar symptoms such as mental fuzziness or slight confusion on this drug? Thanks..

10 replies...

how long will i be out of work
Posted by beki
Last Reply October 5, 2016
Started June 9, 2009
i have been having problems for over 2 months with my left leg. we finally know after an ultra sound that i have a dvt in my upper leg / groin. the pain is finally starting to go away but i'm still not allowed to go back to work.(it's only been a week since we found the blood clot) can anyone tell me how long it's gonna take? i'm afraid i'm going to lose my jobs and i'm through my savings. i could lose my job, my home, and everything else.

18 replies...

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