[Murray]

Looked in the Health Issues section - no place to run a thread on coumadin. So, here 'tis.

Am on a lifetime regimen due to severe DVT's when in rehab (04). Do the monthly pro-time/INR bit. Numbers usually stay between 2.1 - 2.8. Today, I banged a 3.7

Haven't been in the 3's for ages. No change in medication. No significant changes in diet. (No booze since sci) Slight increase in exercise regimen recently. Had flu bug last week, but was over that in less than 3 days. No UTI. No nothin'

Hell! Anybody got similar experience? Solutions?

(I'm adjusting my dosage today and tomorrow; then back to regular - follow-up appt next week

Thanks

Lynn

This post has been edited by Murray: 29 April 2009 - 10:02 PM

[JustJayde]

Murray, on Apr 29 2009, 03:58 PM, said:

Looked in the Health Issues section - no place to run a thread on coumadin. So, here 'tis.

Am on a lifetime regimen due to severe DVT's when in rehab (04). Do the monthly pro-time/INR bit. Numbers usually stay between 2.1 - 2.8. Today, I banged a 3.7

Haven't been in the 3's for ages. No change in medication. No significant changes in diet. (No booze since sci) Slight increase in exercise regimen recently. Had flu bug last week, but was over that in less than 3 days. No UTI. No nothin'

Hell! Anybody got similar experience? Solutions?

(I'm adjusting my dosage today and tomorrow; then back to regular - follow-up appt next week

Thanks

Lynn

I too am a lifer on Warfarin due to extensive DVT - and have had many ups and downs in my 10 months on warfarin. It will be stable around 2.5 - 2.7 for weeks and then it will just go wonky. I got as high as 4.7 for a week and was up above 3 for about 3 months before we got it to come back down with adjusted dose. My doctor told me that it is just the way warfarin is. Everything affects it. I have weekly tests and have to adjust my dose almost every week or 2. Even having a flu and eating more or less can change your INR. As can changes in activity.

I wouldn't worry about it but maybe get tested more often than once a month? That way you keep on top of the dose?
I can't imagine just testing my INR once a month because doing it weekly shows me how very much it can change each week.

Hope you level out soon

[Murray]

I too am a lifer on Warfarin due to extensive DVT - and have had many ups and downs in my 10 months on warfarin. It will be stable around 2.5 - 2.7 for weeks and then it will just go wonky. I got as high as 4.7 for a week and was up above 3 for about 3 months before we got it to come back down with adjusted dose. My doctor told me that it is just the way warfarin is. Everything affects it. I have weekly tests and have to adjust my dose almost every week or 2. Even having a flu and eating more or less can change your INR. As can changes in activity.

I wouldn't worry about it but maybe get tested more often than once a month? That way you keep on top of the dose?
I can't imagine just testing my INR once a month because doing it weekly shows me how very much it can change each week.

Hope you level out soon


Hello Jayde -

Took a minute to read your bio - geesch! You had some serious clots (still do, I guess). Are your capillaries rerouting stuff OK? When my DVT's showed up, I was solid from behind both knees, up the femoral, through the iliacs to the inferior vena cava. The Tpa procedure failed and I was supposed to kick the bucket - or close to it. Too ornery. Got lucky and I'm still bangin' around this place. Just got a helluva surprise with that 3.7. I think the highest I've had in 4-plus years is 4.2. Been lucky - stayin' purdy regular in spite of all the UTI's and other stuff. I shouldn't whine. I really am one lucky sonnuvagun. I help run a little sci support group here in Placerville (Sierra foothills), and a new fella has "arrived" - Get this: he's a C-3,4,5,6,7, & T-1. Damn lucky to be alive. But he's having a rough time of it. Just 19. Used to be an athlete and all that jazz. So, hell! I've got nothing to complain about! Just got surprised when I saw that 3.7.

Thanks for the response. Have a good one, gal.

Lynn

[mrsE]

I have been on warfarin for almost 20 years now and as you say it can be stable for months then take a sudden spike or reduction. I used to take spirulina supplements until I found out that it was quite rich in vitamin k (any green veg will be high in vit K especially cabbage) and vit K has the opposite effect to warfarin. I still take cod liver oil which I know has a similar effect to warfarin so I don't take too high a dose and I have let my GP know how much I take. When I am constipated my warfarin levels spike as some warfarin can be re-absorbed into your body the longer your poo hangs around. If you have a cold or flu and have been sweating with a high temperature then maybe you are a little constipated which may have elevated your INR. As your colon is very long it can take a while to know exactly when this episode was. It also takes a few days for the cumulative effects of warfarin are noticed ie if you had loads of green on Saturday the effects on your INR may not be seen for around 3 or 4 days or longer. If you have a dose of the runs your warfarin levels may dip.
I have been told not to even take herbal stuff like ginko, cinnamon. ginger, fish oil, garlic oil, devil's claw, anti-inflammatories, etc as we just don't know exactly how they work on the circulatory system.
I had a lot of shoulder pain recently and it actually put me off eating for about two weeks and my INR jumped to 6.2 (usually between 2 and 3) now I don't know if it was because I was very constipated or the fact that I was taking loads of paracetamol for the pain or something else that caused it to spike.

Sorry if that is a bit garbled but I do get checked every 6 weeks but if I get a spike or a dip then I get t check every 2 weeks then 4 weeks until it plateaus again.

[alex4bs]

i am also permanent warfarin due to 2 cardiac arrests having had a tripple cabagmy inr s checked monthly i am told no cranberry itake alot heart medsi pain killers as when requiredand seam to 2,6dont adjust dose whithout pharmasists approval it can be very dangerous if you get it wrong

[Murray]

MrsE -

Thanks for the info. You're onto something there - when I had that flu bug, my bowel program was ... well, let's just say it wasn't that successful. Then, after the bug ran its course, I started workin' out too hard right away. Dumb! Another bout with the constipation! Geesch! Figure I'll catch on one of these days ... maybe. Sure is nice when things go smoothly - the INR and the gut. Pray for rain.

You folks in the UK - do you manage your dosage with a physician, a clinician or with your pharmacist? Seems like Stateside you can't look twice at things-medical without having the scrip, dr's orders, sometimes medical insurance "permission" or facsimile. Another argument for "socialized" medicine. Will see how far Obama can stretch we colonists. HA!

Thanks again.

Lynn

[qbounce]

I'm on coumadin . . . have only been for about 8 mo's. I've been nursing a clot in the head blocking my left jugular vein. (I've mentioned it a few times before). The only time my numbers spiked was due to my stupidity in taking an 800mg dose of Ibuprofen. I just wasn't thinking. I damn near passed out due to the drop in BP. Anyway, not doing THAT again!

[JustJayde]

Murray, on Apr 29 2009, 05:08 PM, said:

Hello Jayde -

Took a minute to read your bio - geesch! You had some serious clots (still do, I guess). Are your capillaries rerouting stuff OK? When my DVT's showed up, I was solid from behind both knees, up the femoral, through the iliacs to the inferior vena cava. The Tpa procedure failed and I was supposed to kick the bucket - or close to it. Too ornery. Got lucky and I'm still bangin' around this place. Just got a helluva surprise with that 3.7. I think the highest I've had in 4-plus years is 4.2. Been lucky - stayin' purdy regular in spite of all the UTI's and other stuff. I shouldn't whine. I really am one lucky sonnuvagun. I help run a little sci support group here in Placerville (Sierra foothills), and a new fella has "arrived" - Get this: he's a C-3,4,5,6,7, & T-1. Damn lucky to be alive. But he's having a rough time of it. Just 19. Used to be an athlete and all that jazz. So, hell! I've got nothing to complain about! Just got surprised when I saw that 3.7.

Thanks for the response. Have a good one, gal.

Lynn

My leg is still creating collateral veins - I do have a very small amount of blood flow but not enough to have an actual pulse in my foot to be found without using a doppler so I have to be pretty careful about watching for sores and necrosis etc and I can't really feel my foot at all. I can feel stuff but not normal. I can't tell if it is hot or cold or hurt because the clotting is pushing on so many nerves. I also can not bend my leg at the knee because the clotting is so intense and can not sit properly or bend properly at the waist due to the clotting in my groin and stomach so its a bit of a struggle because I spend most of my time in bed. Which as you know makes clotting worse.

I was sitting near death as well, so I can for sure identify with you there! Glad to see you pulled through that! here is hoping you don't get any more dvts!

I can relate with the new guy - I was a runner/gym rat before my dvt. I miss it every day.

Don't think you have nothing to complain about! INR stuff can be pretty frustrating when it is going all over the place. Hang in there, adjust your dose and maybe see about going more often than 1ce a month. Take care

[irish]

interesting subject. my sci is a result of coumadin, blood got too thin (5+) and started a shoulder bleed,which went to my spinal column, causing t5 incomplete (will be three years in Oct). Check INR weekly and usually am in the 2.5 range, though I've been from 1.9 to 3.5 over the last two years.

keep hearing that an alternative med will be available any day which is less volatile and easier to maintain, but haven't heard anything.

[Murray]

irish, on May 1 2009, 12:11 PM, said:

interesting subject. my sci is a result of coumadin, blood got too thin (5+) and started a shoulder bleed,which went to my spinal column, causing t5 incomplete (will be three years in Oct). Check INR weekly and usually am in the 2.5 range, though I've been from 1.9 to 3.5 over the last two years.

keep hearing that an alternative med will be available any day which is less volatile and easier to maintain, but haven't heard anything.

An alternative?! Cool! What's the timeline? Anybody out there have the scoops on this?

[mrsE]

Quote

You folks in the UK - do you manage your dosage with a physician, a clinician or with your pharmacist?

I go the phlebotomist (at the doctor's surgery) who's sole job is to take blood - the test is sent away that day and the result given to my doctor. I then phone my doctor's surgery either the same night or the following day to be told the INR and whether or not to adjust the dose and make my next appointment.

[Murray]

mrsE, on May 2 2009, 04:13 AM, said:

Quote

You folks in the UK - do you manage your dosage with a physician, a clinician or with your pharmacist?

I go the phlebotomist (at the doctor's surgery) who's sole job is to take blood - the test is sent away that day and the result given to my doctor. I then phone my doctor's surgery either the same night or the following day to be told the INR and whether or not to adjust the dose and make my next appointment.

I've got it pretty cushy - just go to the coumadin clinic; nurse-practioner sticks me fingertip, places a drop of blood on a little plastic gizmo that's read by some little machine - then, bingo - the number pops up on the machine's screen. She makes adjustments to my dosage on the spot. Nice set-up.

Lynn

[JustJayde]

Murray, on May 2 2009, 06:35 PM, said:

I've got it pretty cushy - just go to the coumadin clinic; nurse-practioner sticks me fingertip, places a drop of blood on a little plastic gizmo that's read by some little machine - then, bingo - the number pops up on the machine's screen. She makes adjustments to my dosage on the spot. Nice set-up.

Lynn

dang wish they had that here! my veins are really miserable to stick now because of the hundreds of needles I have had in the last 10 months... they collapse and one draw ends up being 5 pokes just to get the blood. My arms no longer give blood so we have been using my hands for the last 6 months which is ok but they are collapsing too. They are talking about going to my foot for blood next.
No warfarin clinics here that I know of - I go to a lab and they draw a vial and send results to doctor next day. I go once a week.

As for the alternate meds my doctors were telling me 2010 is the "shoot for date" of them being out but from what I am being told they are not meant or tested ( obviously as they are new ) for long term use. They are currently testing them on people who have surgery and just need anti coags for a few weeks/months.

For me I have to wait until I see long term effects because of my vleiden factor - so I am stuck with warfarin and all the horrid side effects that I have - which is another topic all on its own! lol

[Murray]

JustJayde, on May 5 2009, 12:47 PM, said:

Murray, on May 2 2009, 06:35 PM, said:

I've got it pretty cushy - just go to the coumadin clinic; nurse-practioner sticks me fingertip, places a drop of blood on a little plastic gizmo that's read by some little machine - then, bingo - the number pops up on the machine's screen. She makes adjustments to my dosage on the spot. Nice set-up.

Lynn

dang wish they had that here! my veins are really miserable to stick now because of the hundreds of needles I have had in the last 10 months... they collapse and one draw ends up being 5 pokes just to get the blood. My arms no longer give blood so we have been using my hands for the last 6 months which is ok but they are collapsing too. They are talking about going to my foot for blood next.
No warfarin clinics here that I know of - I go to a lab and they draw a vial and send results to doctor next day. I go once a week.

As for the alternate meds my doctors were telling me 2010 is the "shoot for date" of them being out but from what I am being told they are not meant or tested ( obviously as they are new ) for long term use. They are currently testing them on people who have surgery and just need anti coags for a few weeks/months.

For me I have to wait until I see long term effects because of my vleiden factor - so I am stuck with warfarin and all the horrid side effects that I have - which is another topic all on its own! lol

Geesch, girl! Bummer! I remember gettin' poked every morning and evening in rehab - after the DVT's hit. And I remember the nurses having to call the blood-sucker-specialist because my veins were doin' the collapsing thing, too. Some gals (no sexism here - they just all happened to be gals) couldn't find a vein if they got paid. They'd poke around - then once inside the arm ... and supposedly the vein ... they'd start hunting - twisting the needle this way and that. Damn! Hurt like a ________. And I'm not one to complain, either. But that started gettin' me pissed off. I think I scared 'em into calling the specialist before they even came into my room.

Not pleasant memories. Sorry you have to go through that crap so often. Too bad the folks (medical professionals ?!) don't get their _______ together, so their patients (the ones who pay their salaries) don't have to put up with unnecessary pain. Oh well - maybe you can start a movement - picket lines and all that jazz.

Best wishes, kiddo

Lynn

[JustJayde]

Murray, on May 6 2009, 10:31 AM, said:

Geesch, girl! Bummer! I remember gettin' poked every morning and evening in rehab - after the DVT's hit. And I remember the nurses having to call the blood-sucker-specialist because my veins were doin' the collapsing thing, too. Some gals (no sexism here - they just all happened to be gals) couldn't find a vein if they got paid. They'd poke around - then once inside the arm ... and supposedly the vein ... they'd start hunting - twisting the needle this way and that. Damn! Hurt like a ________. And I'm not one to complain, either. But that started gettin' me pissed off. I think I scared 'em into calling the specialist before they even came into my room.

Not pleasant memories. Sorry you have to go through that crap so often. Too bad the folks (medical professionals ?!) don't get their _______ together, so their patients (the ones who pay their salaries) don't have to put up with unnecessary pain. Oh well - maybe you can start a movement - picket lines and all that jazz.

Best wishes, kiddo

Lynn

Oh yea I have a hard and fast rule when I go in. 1. NO DIGGING. If you can not nail it in ONE poke , poke AGAIN. But now and then they ignore it ( like last week the woman was digging so hard in my hand that my skin was pulled a good inch into the air. My mom started to flip out in her head and was close to snapping on the woman (she was absolutely horrified ) so I finally said "Take that OUT and re poke me " and she did. I don't know how my skin didn't rip the way she had it pulled as she dug. It was horrifying! Thankfully most draws are one - 4 pokes and no digging due to me being insistant about it.

I often think of getting my own tester so I would only have to go to the draw labs once a month like you , and I would use my little finger poker every day or two - but at 3+ grand ish I simply can't afford it.

Ah well I can think of worse things - will count myself as lucky. Almost died... so a few needels are ok. Hope I am done with IV's for a while though! lol

Have you tested again to see your INR or are ya still sticking to once a month?
I just got this weeks INR 3.2

[AndrewB]

I like cumadin in my chili.. like alot of it.

[Murray]

AndrewB, on May 6 2009, 11:48 AM, said:

I like cumadin in my chili.. like alot of it.

Good stuff, eh Andrew?


Jayde - thanks for asking. I'm doing better - not perfect, but better. Posted a 1.9. I'll be satisfied with that. Don't go back for 3 wks. Long as I don't bang those 3's anymore - I'm a happy boy.