getting off coumadin

[Alise]

Bill wrote:

Ihave been on coumadin for 13 years. During the past 5 years I have developed neuropathy in my feet. Has anyone else heard of this being associated with coumadin?

I know it has been awhile since you posted your comment, however yes I have been experiencing neuropathy in my feet. It started with pain that felt like sharp needle sticks. I have also, lost most of my sense of smell and taste and my Dr. tells me that none of these are reported side effects of coumadin. How is your neuropathy at this time? Have you remained on the Coumadin since your post?

[Sarcasm]

So, what are the rules? Three months if it's in a leg, 6 months if in a lung, and 1 year if in the brain? What about if you have more than one clot? At what point do they put you on coumadin for life?

[pfwest]

I am on the rat poison too. I had a bad reaction to heparin and developed a HITT. The reaction gave me bloodclots and the doctor had me taken tests now and as far as I know the bloodclots are gone. Still ar coumadin, now I need another surgery does anybody know will I still be on it after surgery? They cannot give me heparin but argatroban. Dont want to be on coumadin anymore. I too gained weight.

[JBar]

Stella wrote:

I found out I only have to complete 6 months of this crazy Coumadin. I don't like the drug.14 day periods and the worst cramps! You're lucky if you can find a doc who will prescribe the right painkiller. This stuff is no joke. I can't wait to get done with this stuff. I wonder........ If it got people high, would people still be forced to be on it for so long? Probably not!!

My husband is on coumadin for 6 months for DVT. It's been only 2 months and he has a constant stomach ache. It has develops into SEVERE abdominal pain three times, with the first time ending up in the ER. In general, his body is sensitive to drugs. One aspirin will upset his stomach and may cause bleeding in his stools. Does anyone have any suggestions to lesson his side effect of abdominal pain?

[mary davis]

I have been on coumadin for 5 years i want off . how do I start.

[mary davis]

i have been on coumadin for 5 years, I want off. where do I start.

[Deb]

I am trying to find out how to get off coumadin. I was on it for blood clots in my lungs that I must have gotten from a long trip I took. They told me I would only need to be on it for a year. Well I lost my job and insurance and it's been two years now. I just want to find out how to wean myself off. Does anybody know how to do that. I take 10 mg. mon, wed and fri. and 5 mg the rest of the week...

[curious]

michelle wrote:

can u tell more about natto? how long have u been on it? are u being tested for pt-inr?
<quoted text>

can u teel me more about natto.

[Hank]

The Phoenix wrote:

I am using nattokinase now. It`s a pretty amazing supplement, too bad there`s not a lot of definitive research on it to get it more attention.
A d-dimer test is going to be your most effective tool after your treatment ends. Get one 30 days after your coumadin stops, then 90 days after that, and then every six months. They will identify a blood clot well before you notice one, and if you don`t have a recurrence inside of a year your chances are good that you won`t be prone to one. The studies i`ve read have all noted that the majority of recurrences happen between 3 and 11 months after warfarin is terminated. Outside of that time frame the rate of recurrence was very low, like between 1 and 3 percent.
Aspirin is supposed to help, but some doctors claim it`s not effective.
Also, if you had a defined "cause" of your current clot the chances of recurrence are very low after coumadin therapy. The only thing that could really throw a wrench in the works is if you have a genetic predisposition to coagulation issues, and the tests for those are pretty standard fare.

Phoenix can you tell me more about your experience with nattokinase and are you still using it while being off the Coumadin for these past couple of years. and if so have you experienced and more clots?

[Barb]

12????? Who took your blood test and why didn't
they explain all this to you? Yes that is high
andd you really should be talking to a Dr. NOW...
Prayers and Thoughts are with you both.

[Bill in Georgia]

June of 2008 I had a Pulmanary Embolism .I was on warfrin for 6 months taken off for a test .My blood test were done a week after I was off blood thinners my INR was then normal results showed vitiam c deficiency Doc told me blood thinners for life just this past week we talked about a 2nd opinion .So i went to a clotting specialist .And she says one week off of thinners test could have been wrong .So it's more blood test for me . My problem is if the test come back normal then what caused my PE . I have no reason for the PE passed all the questions no history etc....Just looking for some thoughts on this also I'm 37 years old and work with my hands and cut myself often .Would love to here from the peanut gallery & GOD BLESS!

[terraoutwest]

The Phoenix wrote:

Got my d-dimer back today. It was .01, which I understand is about as good as it could possibly be. It was 2.58 when I was in the hospital. I`m so ecstatic I can hardly stand it.
FWIW, I`m supplementing with nattokinase now. I recommend anyone not on indefinite coumadin treatment look into it. There`s not a lot of definitive testing out there on it, but what there is seems to be very promising.

Phoenix,
Though I am not a professional athlete I do enjoy participating in outdoor sports and motorcycling - neither of which have I done in months. I was training for a triathlon in May when I had a heart attack. I was very surprised (as were others) because I am in great health, eat right, not overweight... I did know though, that I am heterozygous for Factor V Leiden and when I told them that at the ER it was the big turning point of the whole treatment - straight to the operating room...
Anyway, this is my 6 mo point and I am looking forward to getting off the warfarin and back to full training. The hemo said 3-6mo. I think he was kidding when he said 3, because when I went in, he said I'd have to keep my new Ducati in the garage for the summer... so now I'm at 6 months and don't want to hear that again!
I've been running some (short runs & cardiac rehab) but it's hard to trust my body after all that! Hopefully I will be released from the warfarin next week. I have consulted a naturopath here in Austin, who was not impressed by the Nattokinase and was more inclined to have me investigate Lumbrokinase, a product made from -yuck- earthworms. I'm interested if it means I can stop worrying about falling off of things - like my bicycle. Though I never mean to, I do once in a while take a slide.
http://www.digitalnaturopath.com/treat/T44744...
This is supposed to be better researched than Nattokinase, which I have read has some doctors claiming that Natto isn't a good idea. My naturopath was adamant that Coumadin was my best option at that point (in May/June) and agreed wholeheartedly (no pun) with my Hemo Dr. and cardiologist.
Since you are doing better now, you may not look at these posts anymore, but if you do, check this out. I also have been making a plan to control things with diet, fish oil, aspirin etc. I just hope that I do OK. Hard to trust your body after an event like a heart attack. Drop me a line if you do read this and check out the earthworm meds. Hope you're doing great, it is wonderful cycling weather down here in Austin. I have a friend at the IronMan in Florida for Saturday's race. Thanks (Everyone) for your posts, they are very informative.

[terraoutwest]

Another source of info (download product info sheet) for the "earthworm med" Lumbrokinase.

http://www.allergyresearchgroup.com/Mar-2009-...
and here:
http://www.canadarna.com/b_fib.htm

there is much more if you just google...which I'm sure you all are good at if you got here in the first place!

[Dave]

Look into this...
fish oil - Omega-3 fatty acids that are created by fish oil serve as anticoagulants.
Capsicum Frutescens-Cayenne,
Vaccinium Myrtillus-Bilbery,
Curcuma Longa-Tumeric
Zingiber Officinale-Ginger. These herbs help reduce platelets'stickiness which will eventually cause clotting.
Allium Sepa-Onion
Sativum-Garlic, these will also reduce platelet stickiness and fibrin.
Ginko Biloba-Gingko which reduces protein.

Boluoke

Alpha-linolenic acids like the one found in walnuts help boost the immune system protect against heart attacks and reduce blood clots. Eat cup of walnuts a day.

B-complex vitamins protect against blood clots and hardening of the arteries.

Vitamin C prevents the oxidation of bad cholesterol, which helps prevent blood clots.

1. Salmon
2. Flaxseed
3. Oatmeal
4. Black of kidney beans
5. Asparagus
6. Oranges
7. Tomatoes
8. Acorn squash
9. Cantaloupe
10. Papaya
11. Dark chocolate
12. Tea
13. Almonds
14. Walnuts
15. Red wine
16. Tuna
17. Tofu
18. Brown rice
19. Soy milk
20. Blueberries
21. Carrots
22. Spinach
23. Broccoli
24. Sweet potatoes
25. Red bell pepper

[Brynn]

clorey johnson wrote:

i am on cumadin and losing hair

I am losing my hair too :( I am a 24 year old female on coumadin. It is to the point where my 6 month old baby has hair ball clumps caught in her fingers and my husband has my hair on him constantly. I am praying that it stops..or they will finally take me off of this drug.

Other side effects I have had:
1. TIRED
2. BUMMED - unable to participate in fun sports like surfing :(
3. Chronic leg swelling
4. Pain in my leg
5. DISAPPOINTED - I am lost in the shuffle. My primary Dr. doesn't know what is going on, and the coumadin clinic simply reports back my INR results. Just feel like a lost case.
6. SCARRED - Just got my filter removed. Nothing like a big old cardid artery scar on your neck. Thank god my husband married me before all of this.
7. HAPPY - STILL ALIVE :)