RE: Warfarin (coumindin) problems

[Guest guest]

Hi Cammy,

Isn't it fun?!

Seriously, I know it's not. I am taking warfarin (Coumadin) as a result

of multiple clots in both of my lungs just under a year ago now. I

didn't think I was going to live through that episode, so I know how you

feel.

My INR is still very unstable, often dropping way too low

(subtherapeutic) or way too high (supratherapeutic, as it is right now).

It does take a while for the INR to stabilize, and any little thing you

do, almost, can change it. Consistency in lifestyle and diet is the key

to stablizing the INR.

If you're interested in chatting more about INRs, warfarin,

interactions, etc., please write to me privately and I can provide you

with some resources and additional information (not really relevant to

this CML list).

G.

www.cmlsupport.com

www.upstairswindow.org

[ ] Warfarin (coumindin) problems

Hello everyone,

I have been off for a long time, but still lurk every once in awhile. I

am currently on 400 mg of im and 60mg of protonix, a weekly shot of

procrit. Well abouyt 8 weeks ago I was diagnosed with DVT and a PE

(blood clots in the left leg and left lung) I was put in the hospital

for a night and given warfarin and shots of heperin. Well here it is

almost 8 weeks lat4er and my level of warfarin has not gone up to a

theraputic level. I am currently am at 1.4 (sould be between 2.0 and

3.0). I happened to read the sheet from my pharmacist and #1 on the

list is about IM. I spoke to him and he said that my levels wouled rise

quickly and that there was a possibility that that I would get toxic.

Well not here. I am currently up to 15 mg 3 days a week and 10 the

other days. It has not leveled off. The Anti-Coagulation clinic is

faxing the info to my Onc to see what she says. I am at my whits end. I

am soooooooo tired and still GAINING weight. I have now gained almost

45 pounds since I was diagnosed. I have been out of work since the 5th

of January, with September being the time I WANT to be back (6 months

on the warfarin-time to get OFF)

[Guest guest]

Hi Cammy, ,

Yes indeed it is lots of fun. I have been on Warfarin since 1991 (aortic

valve replacement). My INR continues to be unstable and needs adjusting

on a monthly basis.

Don't you just love it when your INR is a bit high and you cut yourself

or bump into something?

Zavie

[ ] Warfarin (coumindin) problems

Hello everyone,

I have been off for a long time, but still lurk every once in awhile. I

am currently on 400 mg of im and 60mg of protonix, a weekly shot of

procrit. Well abouyt 8 weeks ago I was diagnosed with DVT and a PE

(blood clots in the left leg and left lung) I was put in the hospital

for a night and given warfarin and shots of heperin. Well here it is

almost 8 weeks lat4er and my level of warfarin has not gone up to a

theraputic level. I am currently am at 1.4 (sould be between 2.0 and

3.0). I happened to read the sheet from my pharmacist and #1 on the

list is about IM. I spoke to him and he said that my levels wouled rise

quickly and that there was a possibility that that I would get toxic.

Well not here. I am currently up to 15 mg 3 days a week and 10 the

other days. It has not leveled off. The Anti-Coagulation clinic is

faxing the info to my Onc to see what she says. I am at my whits end. I

am soooooooo tired and still GAINING weight. I have now gained almost

45 pounds since I was diagnosed. I have been out of work since the 5th

of January, with September being the time I WANT to be back (6 months

on the warfarin-time to get OFF)

[Guest guest]

Yes, I'm quite the bleeder! :-) It sort of makes shaving my legs a

stupid activity.

The problem I'm having with my high INR is that I'm getting a lot of

headaches. I'm going in every week (or more) to check my INR and make

adjustments. I don't mind that much, though, because it actually gives

me some down time. Zavie, do you also have a filter in? Have you noticed

additional side effects over time as you've remained on warfarin?

G.

RE: [ ] Warfarin (coumindin) problems

Hi Cammy, ,

Yes indeed it is lots of fun. I have been on Warfarin since 1991 (aortic

valve replacement). My INR continues to be unstable and needs adjusting

on a monthly basis.

Don't you just love it when your INR is a bit high and you cut yourself

or bump into something?

Zavie

[Guest guest]

Hi ,

I don't understand what you mean by having a filter in.

It's hard to tell if I have any additional side effects on Coumadin. For

any new side effect, I usually blame it on Gleevec.

What level of INR are you at? For a valve the suggested range is 2.5 to

3.5. I try and keep it around 2.5.

If you look up the side effects of Warfarin you will find headaches high

on the list.

Zavie

RE: [ ] Warfarin (coumindin) problems

Hi Cammy, ,

Yes indeed it is lots of fun. I have been on Warfarin since 1991 (aortic

valve replacement). My INR continues to be unstable and needs adjusting

on a monthly basis.

Don't you just love it when your INR is a bit high and you cut yourself

or bump into something?

Zavie

[Guest guest]

Hi Zavie,

I meant a filter to catch any clots that may occur. Some people have

these implanted. But I suppose your situation is a bit different, and I

dont' think you did have a clot. Sorry to confuse you.

RE: [ ] Warfarin (coumindin) problems

Hi Cammy, ,

Yes indeed it is lots of fun. I have been on Warfarin since 1991 (aortic

valve replacement). My INR continues to be unstable and needs adjusting

on a monthly basis.

Don't you just love it when your INR is a bit high and you cut yourself

or bump into something?

Zavie

[Guest guest]

Hi Cammy,

There are many, many things that interact with warfarin (Coumadin). Many

medications, foods, activities. So if your INR isn't coming up as it

should be, you really need to look at everything you do.

Also, the belief that people taking warfarin must avoid leafy greens and

other vitamin K-rich foods is an inaccurate, outdated and even unhealthy

myth. All you have to do is be *consistent* in the amount you consume.

You can still eat broccoli, etc. (I don't think cauliflower even ranks

that high in vit. K, by the way.) You can even drink green tea

(extremely high in vit K), if you drink the same amount every day. So

wherever you are getting information about eliminating vit K from your

diet is pure nonsense (if it's from your docs, they need a refresher

course in warfarin management). I have a list that shows vit. K content.

Did you know that mayonnaise is a big culprit?!

Finally, remember that people are affected differently by different

things. What changes the INR for one person may not have an effect in

another. Also, something that raises the INR in one person can lower it

in another. Some people have rock solid INRs, some people don't. In the

year I've been taking warfarin, my INR has not been stable at all.

You need to get comfortable with the concept that your INR may fluctuate

a lot (or it may not) and that you may need to do a lot of tweaking.

With my wacky INR, I am sometimes getting blood tests two or three times

a week. Yes, it's annoying. But you just deal with it. It could be

worse, right?

Did your docs ever say what provoked your PE?

~ G.

www.cmlsupport.com

www.upstairswindow.org

[Norton AntiSpam] [ ] Warfarin (coumindin) problems

Well I guess I am not as anusual as I thought. -or is it

Cheryl??? I started having HORRIBLE headaches with the warfarin. So

bad that I thought my head was going to fall off and I hoped it would.

I went to my earthy crunchy regular doc and she gave me fiorecet(sp!)

I take it now when I get that bad. One good side effect is that it is

supposed to raise my INR level....yeah right!!! I went this morning

and my level is down to .8 thats right ) 0.8 compared to what they

want-2.0- 3.0. I am taking shots of Lovenox (heparin) till the level

gets set. My ONC is pretty much in la la land with this. She wants to

wait a few more days to see what happens with the increase. I am doing

5 days of 15mg and 10mg the other 2. It is NOT going to make a

diffence (as I believe) I do NOT eat broccoli, greens, cauliflower

anymore and I HATE it. I love my salads and broccoli is my FAVORITE

vegtable!!!

On another notemy constant complaint is still there GAINING

weight!!!!!!I go back to Dana Farber on Monday. I will ask the doc

there about the warfarin/coumindin problem.

Thank you all so much,

Cammy