Do you have a coumadin horror story?

[Julie]

It would be very interesting to know how much your dose was raised and what INR's you had that you thought to be high. Could you post your complete dosing schedule? I've never ever, in many years, heard of Coumadin causing one to be dizzy and out of it.

Tell us the story. You almost died twice from ? clots?

See my post above... I was apparently bleeding internally, and the blood loss caused me to feel dizzy and 'out of it'. I literally felt like I was 'going by-by'! I had been on a schedule of 5 mg. of coumadin three times a week, and 2.5 mg. 4 times. I was raised to 10 mg. three times a week, and 5 mg. four times a week. My regular doctor was leaving, and the doctor that changed my dose was a 'fill-in'. There are so many things that affect the PT time, and I've learned to 'regulate' myself after my blood test. If I've eaten more greens than usual, and my test makes them raise my dose, I don't... Been there, done that. I know what causes the number to change, and I know that if I quit the greens, next time I get tested my number will be back to where they want it, which is between 2.5 and 3.

 

[neil]

wow there seems a lot to take on board with coumadin, it cert gets people taking,am on aspirin 75mg a day,and touch wood have no side effects,

 

[Ross]

I had been on a schedule of 5 mg. of coumadin three times a week, and 2.5 mg. 4 times. I was raised to 10 mg. three times a week, and 5 mg. four times a week.

What was your INR when you were on 25mg a week? 25mg to 50mg is a 100%increase and there is no doubt in my mind that would cause trouble. It should never be increased more then 20% at a time until your sweet spot is found.

If you've figured out how to regulate it, is home testing an option for you? It would certainly benefit you.

 

[ALCapshaw2]

I missed your post, sorry. My number was 10.2!!! I'm darn lucky to be alive I know. Coumadin is a horrible, but necessary drug! It's not only the danger of bleeding to death (my late husband did after surgery), but it's the tiredness, hair loss, capillary bleeding, etc. that makes it even more horrible to live with. I tried going off it once, and paid a price for it, and so I live with the horrid side effects and danger. I am anxiously awaiting for a SAFE alternative!!!

I disagree with your statement that Coumadin is a Horrible Drug. As you note, it is a Necessary Drug for patients who pose a risk of clotting which can lead to Stroke and other issues.

The Real Problem with Coumadin is MISMANAGEMENT by under-educated or uneducated Managers. It is wise for Coumadin patients to Educate Themselves so that they can recognize inept management / recommendations and protect themselves.

Have you read AL Lodwick's website www.warfarinfo.com?
Or the "sticky's" at the top of the Anti-Coagulation Forum listing? Those are good places to start.

Studies have shown that Self Testing and Self Management has the Lowest Rate of complications, followed by dedicated Coumadin Clinics with properly trained Nurses or Pharmacists overseeing patient care.

'AL Capshaw'

 

[lance]

Putting on my flame suit ......................

Putting on my flame suit ......................

because I believe that ACT brings with it the the ability to be mis-managed. The danger is built in. To me ACT is the rattlesnake that lives in my sock drawer. Since I have learned to live with him and keep him under control we get along just fine--and I get to keep him the rest of my life so it's getting better.
Thanks to my "XS" and the information I have learned on this website his presence is well-controlled. How many others have not been this lucky?
This is my opinion based on 9 years of ACT. If others don't share my opinion that's all right. I understand.

 

[Ross]

because I believe that ACT brings with it the the ability to be mis-managed. The danger is built in. To me ACT is the rattlesnake that lives in my sock drawer. Since I have learned to live with him and keep him under control we get along just fine--and I get to keep him the rest of my life so it's getting better.
Thanks to my "XS" and the information I have learned on this website his presence is well-controlled. How many others have not been this lucky?
This is my opinion based on 9 years of ACT. If others don't share my opinion that's all right. I understand.

Ooo, great opportunity for this:

You can't blame the drug for inept professionals. Al Lodwick is working our country hard trying to educate these people.

He'll be in Florida soon, so any of you in Florida, get out there and meet the man if possible:

UPCOMING CLASSES ARE SCHEDULED FOR

Miami FL

West Palm Beach FL

Melbourne FL

Orlando FL

Tampa FL

Ft. Myers FL

Baton Rouge LA

New Orleans LA

Jackson MS

Pensacola FL

Tallahassee FL

Jacksonville FL

 

[Julie]

What was your INR when you were on 25mg a week? 25mg to 50mg is a 100%increase and there is no doubt in my mind that would cause trouble. It should never be increased more then 20% at a time until your sweet spot is found.

If you've figured out how to regulate it, is home testing an option for you? It would certainly benefit you.

I had been holding between 2 and 2.9. I know that everything I eat affects my next test, which is why I have learned not to 'listen' to them when my dose is increased dramatically.

 

[Julie]

I disagree with your statement that Coumadin is a Horrible Drug. As you note, it is a Necessary Drug for patients who pose a risk of clotting which can lead to Stroke and other issues.

The Real Problem with Coumadin is MISMANAGEMENT by under-educated or uneducated Managers. It is wise for Coumadin patients to Educate Themselves so that they can recognize inept management / recommendations and protect themselves.

Have you read AL Lodwick's website www.warfarinfo.com?
Or the "sticky's" at the top of the Anti-Coagulation Forum listing? Those are good places to start.

Studies have shown that Self Testing and Self Management has the Lowest Rate of complications, followed by dedicated Coumadin Clinics with properly trained Nurses or Pharmacists overseeing patient care.

'AL Capshaw'

I would LOVE to have a home test kit, but I am uninsured. The machines cost thousands of dollars. I pay for my own lab tests from the hospital lab. I still maintain that coumadin is a dangerous drug, and not only because of mismanagement. The effects it has on the body - long term - are not good to say the least. But yes, for us, the only other option is death. I still believe there are less dangerous options out there, that are 'natural', and that's where I am putting my energies.

By the way, my husband went into the hospital for valve replacement surgery, and literally bled to death under the noses of every doctor and nurse that saw him. Yes, there were tests done multiple times a day. His entire body cavity was filled with blood from bleeding that began with an old ulcer (the hospital knew about it), and when his stomach couldn't hold any more blood, it ruptured and the blood continued to fill the body cavity. He finally 'stroked out' from a lack of blood to his brain, and blessedly, died a day later from total loss of blood. So please don't tell me this isn't a dangerous drug. Please. Even the coumadin physicians insert says that life threatening bleeding can occur even with 'normal' range blood tests.

 

[Ross]

I still maintain that coumadin is a dangerous drug, and not only because of mismanagement. The effects it has on the body - long term - are not good to say the least.

I RCB has been on it for 48 years and Dick0236 for 41, I'm sure they'd even disagree with the effects it has on the body. I'm not saying your not entitled to your opinion, just that it is your opinion and not fact.

The GI bleeding issue---Yes, even a normal fully coagulated person can have a major bleeding incident just as you describe. This is why when people come here and ask about drinking and Coumadin, we don't encourage it, yet most of us do have some from time to time. If anyone is predisposed to ulcers or previously has had one, stay away from the Alcohol people. It doesn't take long to bleed out of a GI bleed.

Julie you've figured out what you need to do to stay in range, you cannot home test, but why not self dose? Sure, I should not give you that advice, but honest to God, if some of us don't take the bull by the horns and do it ourselves, we will never be managed properly. You admit that you don't listen to them about increasing your dose and know what affects your INR as far as food, I'd say your ready for that step. It's not rocket science, just small changes of 5 or 10% up or down over the week and then you could eat whatever with out running out of range. Your diet would be adjusted for. If your interested, have a look at this link:
http://www.aafp.org/afp/990201ap/635.html

 

[Julie]

I RCB has been on it for 48 years and Dick0236 for 41, I'm sure they'd even disagree with the effects it has on the body. I'm not saying your not entitled to your opinion, just that it is your opinion and not fact.

The GI bleeding issue---Yes, even a normal fully coagulated person can have a major bleeding incident just as you describe. This is why when people come here and ask about drinking and Coumadin, we don't encourage it, yet most of us do have some from time to time. If anyone is predisposed to ulcers or previously has had one, stay away from the Alcohol people. It doesn't take long to bleed out of a GI bleed.

Julie you've figured out what you need to do to stay in range, you cannot home test, but why not self dose? Sure, I should not give you that advice, but honest to God, if some of us don't take the bull by the horns and do it ourselves, we will never be managed properly. You admit that you don't listen to them about increasing your dose and know what affects your INR as far as food, I'd say your ready for that step. It's not rocket science, just small changes of 5 or 10% up or down over the week and then you could eat whatever with out running out of range. Your diet would be adjusted for. If your interested, have a look at this link:
http://www.aafp.org/afp/990201ap/635.html

Thanks Ross. I have 'taken the bull by the horns', and I basically am 'self dosing' these days. I've had times in the past while adhering to doctors dosages, that fresh blood would start dripping out of my nose, and my teeth would bleed badly when brushing. Also, I've had mornings where I've woke up and found blood on my pillow, that obviously came from my mouth. After the death of my husband, I realized that if I didn't take control of my own life and my own body, 'they' would probably end up killing me and say, "Oh well."

 

[Fran]

I agree that it is an individual rather than the Coumadin itself can be the crux of the matter. My first tester was a nurse who was so well-versed in the ranges and my INR was quickly established at therapeutic levels. She left to do nurse prac school and I had to go to a Coumadin clinic and my INR would be too low one week and then shoot up to 8 or so for no reason at all with same diet! I was so frustrated. My Coumadin horror story was being prescribed Z-pack for flu symptoms by our GP and landing in ER with INR at 13 and horrible horrible uhhhhh yuck vaginal bleeding. Fresh frozen plasma and Vit K tab fixed that overnight. No clots until now while doing my Plavix and aspirin combo (off-label usage) that also drilled a hole in my stomach. So, beware the Z-pack /Coumadin issue! I'm going to be getting home monitoring machine as my cardiologist has urged. Hoping that will make the difference!

 

[lance]

Just read this thread and I wonder...................

Just read this thread and I wonder...................

I started taking warfarin since my vavle replacement April/08 and I was told be careful when shaving your bound to bleed LOTS more.. and ya theres some misconception about warfarin/coumadin i found out. Becareful, don't cut yourself,bruising, etc..I found it's not much different, I've cut my self a couple time shaving I didn't bleed liters of blood or blood poured out of my eyes. Overall just have to take care of ur self a little more.

Hello Duncanjo,
Do you remember when your were told about ACT (anticoagulation therapy) or OAT (oralanticoagulation therapy). Did you have any idea what "warfarin for life" meant when you had a chance to say no?

I'm from Ontario as well and all I was told by my surgeon prior to valve replacement was that "warfarin is just a little pill and requires you to have blood tests every month or so". Unfortunately I believed it. I'd been on digoxin for years and thought I knew about little pills.

Was your surgery in London?

 

[Ross]

I agree that it is an individual rather than the Coumadin itself can be the crux of the matter. My first tester was a nurse who was so well-versed in the ranges and my INR was quickly established at therapeutic levels. She left to do nurse prac school and I had to go to a Coumadin clinic and my INR would be too low one week and then shoot up to 8 or so for no reason at all with same diet! I was so frustrated. My Coumadin horror story was being prescribed Z-pack for flu symptoms by our GP and landing in ER with INR at 13 and horrible horrible uhhhhh yuck vaginal bleeding. Fresh frozen plasma and Vit K tab fixed that overnight. No clots until now while doing my Plavix and aspirin combo (off-label usage) that also drilled a hole in my stomach. So, beware the Z-pack /Coumadin issue! I'm going to be getting home monitoring machine as my cardiologist has urged. Hoping that will make the difference!

You ask anyone in this forum and they would have told you that your INR will rise when using the Zpak and to have your INR checked in 3 days after starting it.

 

[ALCapshaw2]

Not too long ago I went through a 10 day regimen on Azithromycin (same antibiotic as the Zpak) and my INR seemed to DROP very slightly (about -0.2 if I remember right).

My pharmacist said that there is usually little or NO interaction between Azithromycin and Coumadin.

Maybe this falls into the "everybody is different" category.

 

[Fran]

Hello, new friends! Yes, and I'd had a week's flu, very dehydrated as well, so God only knows what that meant overall. One sick puppy!

This site is a treasure trove of great observations and outreach.

 

[Ross]

AZITHROMYCIN (in Azithromycin Tablets) may interact with WARFARIN SODIUM (in Coumadin Tablets)

Azithromycin may block the breakdown of warfarin by the liver. If this happens, blood levels of warfarin could be increased and this could increase its anticoagulant effect. Warfarin is generally used to prevent your blood from "coagulating" or forming blood clots. When azithromycin and warfarin are used at the same time, your blood may be much less likely to clot and this may increase the risk of excessive bleeding. If these drugs are taken together, your doctor may want to monitor you closely when therapy with azithromycin is either started or stopped. Blood tests can be used to make sure that you are getting the right amount of warfarin. If you are experiencing problems, it may be necessary to adjust the dose of warfarin.Ask your healthcare provider about these drugs and this potential interaction as soon as possible.

This interaction is well-documented and is considered major in severity.

http://www.drugdigest.org/wps/porta...hromycin+Tablets^Coumadin+Tablets^&step=check

 

[ALCapshaw2]

Here's what AL Lodwick had to say in response to a Question about Azithromycin back on April 14, 2006:

(Quote)
The zith should affect the INR. I know that sometimes it doesn't but I can't figure out why.
__________________
Al Lodwick, R.Ph.
Certified Anticoagulation Care Provider
Go to my website for warfarin information
(End Quote)

Bottom Line: "It Depends" - apparently some people will experience a change in INR with Azithromycin and some won't...

Best Advice: Get tested for INR 3 to 5? days after starting Azithromycin

 

[Marty]

All warfarin patients must be aware of any changes, particularly new medications. Frequent INR checks are indicated and this is where having a home monitor is helpful. If a strong antibiotic is prescribed check the INR every three days until you note whether the antibiotic is having an effect. Every body is different. I learned here that acetominophen ( Tylenol) has NO effect. However in my case and I have checked this over and over again I must reduce my weekly dose of warfarin 10 to 20 % If I take 1000 mgm of Tylenol daily. I take the Tylenol when my polymyalgia rheumatica kicks up. My favorite drug Percoset has no effect but I don't use it anymore. Got to like it too much.

 

[lance]

Recent trip to ER could have been a horror story

Recent trip to ER could have been a horror story

required complete blood testing that revealed my INR was 4.0. So far so good.

Attending doctor was horrified advising me to drop warfarin for 2 days in other words 21 mgs.

So I took a deep breath asking why I was on warfarin, what my range was and how much I took daily, weekly.

He couldn't answer my questions and thought my range was 2-3 like everyone else.

The correct dose adjustment was a 1-time only reduction of 2.5 mg.

So had I been unconscious? ...................

A new Med-alert bracelet will state my correct range. Hopefully if there is a "next time" someone will read it.

 

[olefin]

I get all my prescriptions through VA. Therefore I have to go to the local clinic once a year for a check up. Normally they do blood work but don't check my INR. Because they know I rely on my cardiologist for control.

Well this time for some reason, they did check INR, must been with a meter for they had results in minutes. They out right panic! For it showed 4.2 INR. They wanted to give me a vitamin K shot right then! I flat out right refused! I said no way. I wasn't about to allow them give me a VK shot. But to please them I went to my cardiologist for a recheck. The results came back normal INR. Had I let VA give me a vitamin K shot I might not be here today or might have less brains than I already have.

My INR has been as high as 6.6. No ill effects what so ever. It's been over 5.0 several times over the years. We shoot for 2.5 to 3.5 with 3.0 preferred. Some doctors don't like that. Once got into a darn HMO, had to go to a GP. He didn't agree with 2.5 to 3.5. I fired him and got out of the HMO and back to my Cardiologist.