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Re: Ken & Coumadin

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Barb,When Bill was on the Warfarin we were at the blood lab every other day for quite awhile to get the right amount.The nurse at the clinic there was always ready to quiz us on what he was eating and then telling us what to do.Does your hospital have a coumadin clinic? They were quite helpful.LeeKen & I are both so frustrated.  He was on Warfarin for 2 weeks, switched over to Coumadin (brand name only) at least 2 weeks ago and has been taking 10mg for over a week and still can’t get his INR up over 1.4. Anyone have any ideas?  

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-----Original

Message-----

When Bill was on the Warfarin we were at the blood lab every

other day for quite awhile to get the right amount. The nurse at the clinic there was always

ready to quiz us on what he was eating and then telling us what to do.

No clinic at local

hospital, but we don’t think the problem is due to diet. While he should be eating greens and the

other things on the Vitamin K list, he hasn’t been. Normally, we wouldn’t mind going in

to the doctor’s office, but it’s a half hour one way and going

twice a week (or more) is getting old already, especially with no results! We’ve checked everything and can’t

come up with a reason for low INR.

He really wants to stop the shots and it bothers me that I can’t

help him do that……

With love, Barb in Texas - Together in the Fight,

Whatever it Takes!

Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in

Dallas

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Oh Barb, my heart goes out to Ken because I know right where he is.Black and blue and tired of all the blood drawings.UM in Michigan had a coumadin clinic and every-time you had the blood work done a nurse from the clinic would call to help you. In Bill's case sometimes it was too high, other times too low.They didn't want him eating Vit K foods like spinach so that they could get him on a regular dose.The pills went up and went down. He needed a year of therapy and he finally settled in at 2.5 pills of warfarin.Are they still tampering with Ken's dosage? SOmetimes it seems there is no rhyme or reason. One time we got a call that Bill's INR had jumped to 7 and we hadn'tdone anything different than usual. Never did figure out why.I'll be thinking of Ken and hoping they can get him off the shots real soon.LeeNo clinic at local hospital, but we don’t think the problem is due to diet.  While he should be eating greens and the other things on the Vitamin K list, he hasn’t been.  Normally, we wouldn’t mind going in to the doctor’s office, but it’s a half hour one way and going twice a week (or more) is getting old already, especially with no results!  We’ve checked everything and can’t come up with a reason for low INR.  He really wants to stop the shots and it bothers me that I can’t help him do that……    

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-----Original

Message----- Are they

still tampering with Ken's dosage?

No matter what we do, we can’t get his INR up over

1.4 - He’s taking 10mg of Coumadin (Brand

name only.)

His platelets are up again too. 1st week – 498, 2nd

week – 525, this week they were 597. This is on top of the aspirin he

takes daily, the 2 Lovenox shots a day and the Coumadin. I don’t know which one to worry

about…. that he’ll get another blood clot or have a bleed! UNCLE - enough already!

With love, Barb in Texas - Together in the Fight, Whatever it Takes!

Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas

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Good grief ! WIth all of that I can't imagine why his INR isn't up.I guess the experts don't know either.Hang in there, when it moves it will probably really jump.At one point, when Bill's was erratic , my husband made me buy him slippers so that he wouldn't step on anything and cut his foot. He wore them once and that was the end of that.Bill's platelets are always high and even now are in the 700's.Lee His platelets are up again too.  1st week – 498, 2nd week – 525, this week they were 597.   This is on top of the aspirin he takes daily, the 2 Lovenox shots a day and the Coumadin.  I don’t know which one to worry about…. that he’ll get another blood clot or have a bleed!  UNCLE - enough already! 

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Barb,

The dose response curve of warfarin/coumadin depends on other

medications, food intake (more specifically Vit K intake), liver

health, and genetic variations in in liver enzymes which metabolize

warfarin (CYP2C9 and VKORC1). Perhaps his donor had the forms of these

enzymes that metabolize warfarin rapidly. Our office manages about 150

patients on warfarin and our daily doses range from 1mg to 12.5mg/day.

I've heard of doses as high as 20mg/day. The day will come when

patients get a genetic test to help detirmine the starting dose. There

are new anticoagulants that will be better because they won't require

monitoring becuase the dose responce is more predictable. My personal

opinion is that the brand name isn't any stronger. The bleeding risk

is related to the INR result not the dose.

Keep up the fight!

Von

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As has been said, Coumadin is "it's own drug, seemingly with a mind of it's own". If the MD can get brave, sometimes it takes a bigger dose for just 2 - 3 days to bump up the INR, then you can cut back. Possibly to give 14 mg for two days, then 10 mg. Check PT INR after 3 days - and see where you are. Lee is right, the level may really jump, but at this point, that could be a good thing - then the fun of skipping a dose for a day or two and restarting on a slightly lower dose!

Just a thought....

Joanne H

(, Ca., mom of , 17, UC/PSC 2-06)

-----Original Message-----From: [mailto: ]On Behalf Of Barb HenshawSent: Monday, October 15, 2007 11:44 AMTo: Subject: Ken & Coumadin

Ken & I are both so frustrated. He was on Warfarin for 2 weeks, switched over to Coumadin (brand name only) at least 2 weeks ago and has been taking 10mg for over a week and still can’t get his INR up over 1.4. Anyone have any ideas?

With love, Barb in Texas - Together in the Fight, Whatever it Takes!

Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas

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I feel your frustration, I have been trying for 2 years to get up to

theraputic levels, as I stated before I am taking 35 mg daily and my

INR is still only 1.5, I'm beginning to think that my doctor is giving

up to because he said I don't have to be retested for 5 weeks

(eeeekkkss lets hope my blood doesn't get thicker or thinner in that

time).

Ken & I are both so frustrated. He was on Warfarin for 2 weeks,

> switched over to Coumadin (brand name only) at least 2 weeks ago and

has

> been taking 10mg for over a week and still can't get his INR up over

> 1.4. Anyone have any ideas?

>

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