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Old 08-01-2008, 06:33 AM   #1
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Lynne64 HB User
Question Coumadin/Warfarin Issues

I am a 44 year old female - no health issues upto April 08 - when I was diagonosed with a DVT in my left thigh. I am currently on 10 mgs of coumadin 5 times a week and 12.5 the other 2 days. I originally started with lovenox for 2 weeks/twice a day when I was first diagnosed. I weigh 155 pounds, my doctor has mentioned that this is a pretty high dosage for someone my age and weight. I have no known factors for the clot, no birth control, not overweight, don't smoke, no long trips. My INR has only been above 2.0 a couple of times in the last 3 months. My last INR was 1.4, so my dr upped my dosage to the above amounts. My concern is that the last couple of days my heart has been pounding, and I feel as though I can not get enough air. I'm not sure if I'm having an anxiety attack (although I've never had them before) that is causing my lack of air and heart racing or visa versa. It has been a real concern and an anchor to my busy life. I have a hard time focusing due to the fact I am so focused on trying to get enough air. I go for another pt Saturday am. I was just wondering if anyone has ever had the same 'out of control' feeling. I'm hoping that my INR is off the chart in ther other direction and the dr lowers my dosage. I can't feel like this for another 3 months - when they will take me off the coumadin and do some 'real' blood work. Which the ER didn't do when I was originally admitted.

Last edited by Lynne64; 08-01-2008 at 06:35 AM.

 
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Old 08-01-2008, 06:51 AM   #2
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earlysunrise HB User
Re: Coumadin/Warfarin Issues

I am 38 years old female and developed a DVT in the left pelvic and entire left leg in Oct 2007. I am currently on Coumadin/Warfarin of 10mg per day. This is a high level is what I heard but nothing to be concerned about. My levels vary either too high or too low but other times it is right where it should be. They adjust my meds according to the INR test results.

My DVT was caused from May-Thurner Syndrome where the right illact artery compresses the left illact vein but enhanced by birth control and genetics (low factor V and protein C). A stint was placed in the vein to correct May-Thurner Syndrome, stopped the birth control but they can't fix genetics...so two out of three were fixed.

I have been on Coumadin/Warfarin since last Oct 2007 and the two biggest side effects for me are the shortness of breath (especially when exercising or doing something intense) and the tiredness. Naps are necessary for me. My leg doesn't hurt or swell but the medicine has side effects I hope not to be on the rest of my life. As I have had a stint placed in my pelvic in January 2008 I am over the six month hump and the doctors tested my D-dimers (shows if you have clots and you want the test results to be positive and less than .5). If my results are positive then I will be dropping my meds down to 5mg with expected readings from 1.5-2 for INR tests. This will be for three months and then a retest of D-dimers and if they are still less than .5 then I get to stop the Coumadin/Warfarin. I will have to go back three months after stopping Coumadin/Warfarin to get D-dimer tested again and long as the results are less than .5 I will be able to stay off the medicine. However if the results during this time are higher I may have to be on the medicine the rest of my life. Either way I will have to get D-dimers done periodically for the rest of my life which tests for clots in your system.

DVT's and taking Coumadin/Warfarin are a long term recovery. It is not a short term thing and it is very frustrating. I am very active myself and it does slow you down. You have to learn to adjust with it. Another recommendation is to wear the compression stockings as they do work. This is why I didn't get the swelling and pain as much I think. Even if I stop the Coumadin/Warfarin I will wear the compression stocking when I travel just to prevent a reoccurance as I have a 20-30% chance of this per the doctors.

I am an accountant and work as a consultant besides my day job. I am very busy and like it this way. Just listen to your body and give it what it needs as your health is too important to just ignore it.

The doctors I have are from NIH (National Institute of Health) and they have provided the best treatment I could not have gotten any where else. I have not had as many problems as my people with DVT's I have read due to their care and treatments. I just hope I never have to go through this again.

Also I plan on having children within the next few years and I am considered high risk now due to a history of DVT. I will have to do the Heprin twice a day when I become pregnant. Reading some of the articles posted here there have been several women who have had babies with a history of DVT's and have done okay.

DVT's effect and change us and there are no real warnings. I had no real symptoms before this occurred except a muscle ache behind my left knee. I just thought I pulled a muscle.

Do you know what caused your DVT? Is it genetic related? Have you seem a hemotologists?

Good luck and I am still waiting for my INR test and D-dimer results today to hopefully start the process of cutting out Coumadin/Warfarin. Take care. =)

Last edited by earlysunrise; 08-01-2008 at 06:58 AM.

 
Old 08-16-2008, 09:20 AM   #3
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Lynne64 HB User
Re: Coumadin/Warfarin Issues

earlysunrise -

how are your levels? Have you been taken off the meds? I tested at 1.9 today, my doctor is leaving me at the same dosage of 10mg 5 times a week and 12.5mg 2 times a week. She won't take me off the warfarin until October - I still wonder why my dose is so high and my INRs so low, dr. can't seem to give me a reason. Maybe it hinges on the original reason that I got the clot to begin with. My doctor mentioned that in October when they take me off to start blood tests, she wouldn't be surprised to find some type of clotting disorder. I guess I need to learn to be patient and see what happens this fall.

good luck to you - I hope your on your way off...

 
Old 08-16-2008, 07:43 PM   #4
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jerseymomma HB User
Re: Coumadin/Warfarin Issues

Hi Lynne,

Have you talked to your doctor about this shortness of breath feeling? I personally suffer from anxiety attacks so I know you don't want to overreact, but at the same time, my girlfreind just last week felt the same way, assumed it was an anxiety attack and ended up having 12 blood clots go to her lungs! I can also tell you from my experience as a former malpractice paralegal that DVT's are nothing to mess around with and I would check with the doctor everytime you feel that way! Im also curious as to why you were not given bloodwork in the ER>?>>

 
Old 08-18-2008, 05:54 AM   #5
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earlysunrise HB User
Re: Coumadin/Warfarin Issues

Hi! Anything can cause the INRs to be low. Mine fluctuated and eventually it was steady at 10mg per day. My INR shot up to 4 and above 5 a couple of times....other times it dropped too low. Just watch what your eating but anything can cause it but I would not worry too much as long as you can maintain staying above 2 and no more than 3.5. The flux was normal for me also.

The doctors after almost a year have reduced my meds to 5mg last week as my D-Dime is below .5 (anything below this number is good) at .1 which tells you how much clotting you have. I go back in a few weeks to get this tested again after my INR is stablized between 1.5-2. Last week at 5mg my results were 1.1 so my doctor increased me back to 8mg. I will go back to 5mg on Friday and retest next week to see if I am in range.

The doctors are hoping to take me off the warfin by three to six months. The shortness of breath is a normal side effect for me on the warfin. Especially taking the stairs or exercising. I take lots of naps but it will get better. The shortness of breath, cold/hot feelings and tiredness are the only real side effects I have had with warfin. I do not have anxiety attacks. Maybe this is one of the side effects for you also.

If you have not seen a hemotologists to get tested to see if the clots my been contributed by genetics I would do this. I have two genetics factors and w/BC and May-Thurner I finally developed a blood clot. They corrected 2 out of 3 but it makes more aware.

Try water exercises for your leg. The doctor advised this and it really helped me as well as elevating the leg when resting/sleeping and moving around a lot rather than sitting for long periods of time.

I had no warning signs and I stand a 20-30% redeveloping per the doctor. The compression stockings really helped me also. When I travel the rest of my life I will be kind to my leg and wear these for flights and road trips just to be safe.

Let me know how you are doing and I wish you the best. This site has been helpful and made me realize it could have been worst.

I will keep you posted on my progress as I hopefully get off this medicine and things get back to normal. I am normally an energetic person but sleep is more important to me know more than ever. =)
Julie

Last edited by earlysunrise; 08-18-2008 at 05:58 AM.

 
Old 04-22-2009, 11:28 PM   #6
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jill60 HB User
Re: Coumadin/Warfarin Issues

Quote:
Originally Posted by earlysunrise View Post
Hi! Anything can cause the INRs to be low. Mine fluctuated and eventually it was steady at 10mg per day. My INR shot up to 4 and above 5 a couple of times....other times it dropped too low. Just watch what your eating but anything can cause it but I would not worry too much as long as you can maintain staying above 2 and no more than 3.5. The flux was normal for me also.

The doctors after almost a year have reduced my meds to 5mg last week as my D-Dime is below .5 (anything below this number is good) at .1 which tells you how much clotting you have. I go back in a few weeks to get this tested again after my INR is stablized between 1.5-2. Last week at 5mg my results were 1.1 so my doctor increased me back to 8mg. I will go back to 5mg on Friday and retest next week to see if I am in range.

The doctors are hoping to take me off the warfin by three to six months. The shortness of breath is a normal side effect for me on the warfin. Especially taking the stairs or exercising. I take lots of naps but it will get better. The shortness of breath, cold/hot feelings and tiredness are the only real side effects I have had with warfin. I do not have anxiety attacks. Maybe this is one of the side effects for you also.

If you have not seen a hemotologists to get tested to see if the clots my been contributed by genetics I would do this. I have two genetics factors and w/BC and May-Thurner I finally developed a blood clot. They corrected 2 out of 3 but it makes more aware.

Try water exercises for your leg. The doctor advised this and it really helped me as well as elevating the leg when resting/sleeping and moving around a lot rather than sitting for long periods of time.

I had no warning signs and I stand a 20-30% redeveloping per the doctor. The compression stockings really helped me also. When I travel the rest of my life I will be kind to my leg and wear these for flights and road trips just to be safe.

Let me know how you are doing and I wish you the best. This site has been helpful and made me realize it could have been worst.

I will keep you posted on my progress as I hopefully get off this medicine and things get back to normal. I am normally an energetic person but sleep is more important to me know more than ever. =)
Julie
Julie,
Did you ever get to stop the blood thinners? I know this is a old post.
I broke my leg last Aug. 4, 2008 & developed a clot where I broke it.
Last u.s. it was 50% gone. THis has been a long 8 months.
The coumadin makes me ache in my joints really bad & I have the tiredness too!

Jill

 
Old 04-24-2009, 03:43 AM   #7
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luvcows HB User
Re: Coumadin/Warfarin Issues

Im glad I read about being tired and having to nap and the shortness of breath as well. I am on aspirin due to a stroke but I have a mild hemophilia so I cannot be on anything stronger. I was concerned about the sshortness of breath, as I too, had a very active lifestyle so the "power napping" frustrates the heck out of me. But, yes, the best advice is to listen to your body.

 
Old 07-20-2009, 04:20 PM   #8
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pacots HB User
Re: Coumadin/Warfarin Issues

I also take coumadin 2wks.ago I was 1.7 today I am 1.4 he is increasing the dosage,is there any other meds that would cause this because I am on a lot.

 
Old 10-25-2010, 12:58 PM   #9
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Carolynn Flemin HB User
Re: Coumadin/Warfarin Issues

I have been on coumadin for over a year.(beacuse of a Pulmonary Embolism) Stopped taking it for 1 month to have blood test done. Doctor had said," coumadin does not cause panic attacks". However, I never felt like I was out of control before I took the coumadin. Nervous jumpy at times like I could not breathe. I understand. I hope you can get off it soon. I felt like I was reading something about me.. with the exception that I am overweight. Good Luck, Carolynn

 
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