Coumadin Drop

[MichelleS]

Hi Everyone!

I'm a newbie, so first thing I'll say is nice to be here. : ) What a fabulous site!

Have a question. I had AVR in '99 and since I chose to become a "bionic babe" : ) with a mechanical valve I'm of course on coumadin. For the longest time I was absolutely fine and only had to be tested once a month, but this summer has been awful and I've had to be tested once or twice weekly.

My INR has been slowly but surely going up for the past couple of months. The latest in the saga is that on Friday I was at 4.5. I'm supposed to be between 3.0 and 3.5, so my doctor told me to skip my dose that day, take my regular dose (8 mg) on Saturday and Sunday, then get tested again on Monday.

Well, today's Monday and my INR has plummeted to 1.8!!!! 4.5 to 1.8 in three days???!!!???? Can anyone explain why my INR would drop that much? Would skipping just one day make that drastic of a difference?

I can't think of any reasons as far as diet goes. I did take antibiotics before a dental appointment last Wednesday, but I would think any effects from that would have shown up in last Friday's test. (I thought maybe that's why it had gone up.)

The only other medication I take is Tegretol for seizures. I switched from regular to timed release Tegretol in June, so I can't imagine that would be causing the change.

*sigh* Has anyone had a similar experience?

Thanks for any feedback and glad to meet everyone. Hope all's well.

Cheers,
Michelle

 

[AMY FLEISSIG]

coumadin drop

coumadin drop

Hey Michelle,
I've been taking coumadin since 1993 when I had my mitral valve replaced with a St. Jude valve. I have had some fluctuations with my INR but I don't think it has been that drastic. Your cardiologist should have given you a list of foods you should not eat too much of, ie: vegetables with vitamin K. like any green leafy vege's. It sounds like you are keeping on top of your INR which is a good thing. I some times forget and do not get my PT/Ptt done when I should. (SHHH don't tell my Dr. or brother) SPeaking of my brother, he will probably read this because he is the one that told me about this web site. HI Greg!! Anyway, Don't worry too much about your INR. I am sure your Dr.s will have it under control soon. Take care.

Amy

 

[Nancy]

Hi-

Welcome to this terrific site. As you already know, there a huge amount of info and experience here. We are also blessed to have as one of our members allodwick who manages a Coumadin clinic and has his own website. Check it out warfarinfo.com. This site is an excellent tool in the understanding of the mysteries of Coumadin. Usually Al checks out posts and will, I'm sure have some answers for you.

My husband has been on Coumadin for 25 years. It fluctuates all the time and it sometimes is hard to pin down why. You just have to go with the flow and make sure you are tested when you are supposed to (Amy---) and take the dose they tell you to take.

The first rule of thumb is that it takes about 3 days for whatever changes are made to your dose to show up in the INR. So any changes normally won't be apparent for the 3 day period.

Antibiotics can have an effect on the INR, usually making it higher. Exercise can affect the INR. Various other meds can affect the INR. Eating green vegetables can affect it, but if you are consistent with what you eat, it's better. In other words, don't eat a whole plateful of salad with dark greens for 3 days in a row, and then not eat them for a week.

There have been times when my husband has had to be tested a couple of times a week. Right now, he's on a 4 day test schedule because he's on antibiotics.

It's important to take your dosage at the same time every day.

It'll still probably fluctuate some. Just the nature of the beast.

Some people say the initials INR stand for "it's never right", LOL.

Good luck.

 

[Guest]

Michelle,
There are two key things that you mentioned in your message that tell what happened. The first is that you are taking Tegretol and that something about the Tegretol was changed. Every person that I have seen who changed something about their Tegretol has thrown their INR out of balance. Please look at my website - specifically at http://www.warfarinfo.com/carbamazepine.htm
Tegretol is one of the wierdest drugs on the market. It does something that is very rare, it stimulates its own metabolism. This means that it "encourages the body to get rid of it faster". It is metabolized by the same enzymes that metabolize warfarin. Anyone who takes both of these drugs is "dancing on the head of a pin" and it is very easy to fall off. The docotr who recommended this change probably had no idea about the seriousness of the interaction. They tend to say, "it's the same stuff, what difference can it make?"
But now that you have made the change - DO NOT THINK THAT SWITCHING BACK WILL SOLVE YOUR PROBLEM. It will not. What needs to be done is that your warfarin dose needs to be re-adjusted in light of this new Tegretol product.

The second thing that you wrote is that you take 8 mg per day. This is a higher than normal dose do to the fact that the Tegretol has your enzymes all revved up. When you are taking a higher than normal dose, and you hold a dose, the bottom will fall out of your INR. This is most obvious when you test on the third day. Your doctors are treating you like an average patient instead of taking into account the precarious position you are in as someone who requires both Tegretol and warfarin.

You need to get very smart about your medications and insist that you not skip a whole day's warfarin for a minor elevated INR such as 4.5. You are much more at risk at 1.8 than you are at 4.5.

This site has lots of people who will encourage you.

Also look at www.acforum.org to see if there is a clinic with a warfarin specialist near you. Then see what you can do to get a referral.

 

[LUVMyBirman]

Hi Michelle,

Welcome to the family. Noticed you are from IL .Anywhere near Chicago by chance?

AL is our expert on Coumadin management. He is a pharmacist that monitors patients like us.

Can't tell you how long it took my doctors, and actually they still don't concur that holding a whole days dose for a mildly elevated INR as Al stated.... sends me to the bottom. Holding 2 days was protocol for their patients. They did this to me a couple of time. Landed in the hospital on the heparin once. Needless to say, I was not a happy camper. Most of the Coumadin nurses follow doctors protocol and will not treat patients individually as everyone should be on this medication. I take 6 to 6-1/2 mg a day. Example my INR was 4.2 today. When taking 6-1/2 mg. Anything below 4.5, I subtract 1-1/2 mg for one day and resume my regular dose. Anything between 4.5 and 6.5 I subratct 2mg. Anything higher and I take 2 mg for the day unless it is really high. Then the doctor is consulted.

When retesting if I am still high...will decrease 1/2 mg a day for the following week. It works like clockwork for me. Coumadin is more of an art that a science I feel.

 

[Christina]

Hi Michelle and Amy,

Welcome to this wonderful site!
I have a St. Jude's mechanical. Am 2 years post-op and am on Coumadin.
Usually my new doctor is okay with a higher INR, but the last couple of times when it happened he instructed me to HOLD the Coumadin for 48 hours.
Like Gina said, I go straight to the bottom with my INR, so when he gives me those instructions I don't listen to him. I just cut my dose in half and test again in two days and I've been fine so far. I have a Protime machine and have been home testing for 18 months. Great tool, and wonderful peace of mind.
I agree with Al, a low INR is much, much more dangerous than a higher. I had to have a second AVR because of a blood clot eleven days after my first AVR. (read my story)
My INR was 1.4, so think about it.
Right now I am taking 22mg a day and my INR was 2.8 last Saturday. I wish it were a bit higher. I feel safer that way.
I am testing again tomorrow.

Christina
AVR's 8/7/00 & 8/18/00
TMC, Tucson. AZ
Dr. Gulshan Sethi
St. Jude's Mechanical

 

[MichelleS]

RE: Coumadin Drop

Hi all,

Thanks for the replies - much appreciated. Lucky me to be on not only one, but two weird medications, eh? : )

I'm sure my neurologist had no clue how switching Tegretols would impact my INR. I worried about it, but he thought it'd be fine. I'm the one who wanted to switch because the regular Tegretol had me feeling like something of a zombie.

Al, if you don't mind me asking something of an O/T question, do you know how often Tegretol levels should be checked? The last time I had mine done was during my yearly physical in November and it was fine. When I saw my neuro in April he said the level wouldn't need to be checked for another year and that seems like an awfully long time! (Nope, he didn't even think it needed checked after the switch!) I guess I'm just used to coumadin fluctuating so much and think that all meds need to be as closely monitored.

In any case, I think I'll call my doctor and ask about having the Tegretol checked tomorrow since I have to go for another INR draw anyway.

Hey, Gina!!! Nice to see someone else from Illinois. ; ) Nope, I don't live near ChiTown - I'm stuck downstate. : D

Thanks again everyone.

Cheers,
Michelle

 

[AMY FLEISSIG]

Christina,
How much was the machine? I have thought about getting it. I have to find out if my "wonderful" ha ha insurance company will cover it. My cardiologist is very conservative and I highly doubt he would want me to use it. I have been on coumadins since 1993 when I had my second mitral valve replaced. This one is a St. Jude, first one was a porcine, oink oink!! Hopefully this was the last surgery. It better last !!!!!!!!
AMY

 

[Christina]

Hi Amy,

I think the price has gone up since I bought my Protime. I believe I saw a post the other day that said it was $2000 now.
At the time when I wanted mine, my insurance refused to cover. I tried four appeals without success.
When you buy it out of pocket they will give you a break.
Call QAS and talk to either Woody or Lance (1-800-298-4515)
They will do whatever it takes to get your Insurance company to cover this great machine. I believe anyone with an artificial heart valve should have one. You will feel so much safer especially when you are on vacation or out of the country. Not having to worry about where to go for lab test in a strange place gives me peace of mind.
When you are at home you never have to take time off from work anymore to go to the lab and sit there and wait and wait. It also is great to know the results before the doctor does. No more waiting for them to call you with the results.
I want to be in charge!


Hope you will be successful in getting your Protime.
Protiming is 'kewl"


Christina
AVR's 8/7/00 & 8/18/00
TMC, Tucson. AZ
Dr. Gulshan Sethi
St. Jude's Mechanical

 

[Zipper]

QAS did everything they could but my insurance denied...It was well worth the price for peace of mind! I agree with Christina...ProTime..in home is KEWL! QAS is GREAT...helpful in everyway and there to answer all questions. I say..."Go for It" ;-)

Zipper

 

[Guest]

I was in contact with the sales rep for CoaguChek today and they are now selling to individuals again.

Michelle, I am originally from St. L. and lived in Danville, IL for several years. I think that a Tegretol level every 6 months or so is acceptable if you are not having problems. I really haven't done much besides Coumadin for the past 5 years, so I'm a little rusty.

Christina, I understand that The Netherlands is the most organized country in the world when it comes to warfarin management. They have nearly 100% of the people going to clinics. I had a e-mail from a doctor there who said that he supervised the care of 4,000 patients on warfarin. I wrote back that I had more like 400 but the area that they come from was bigger than The Netherlands.

 

[Christina]

Thanks Al,

It's great to hear that my old country is that organized in Warfarin management.
I've been gone from the old country for many years, and haven't kept up with how things are in the medical area.
I am flying back there in December to see my family, and I am taking my Protime.
I know that doctors there are very, very busy, and have many, many patients to care for. Al, how would you like to have 4,000 Warfarin patients? To me that seems impossible to do for one person? My previous doctor had 100 he told me, and I know first hand that he wasn't giving the necessary attention to each patient. Too busy! Too many patients on Coumadin.
They have socialized medicine in The Netherlands and the waiting lists are long, just like in Canada and GB.
I am thankful I was in the good old USA when I needed my surgery pronto and wasn't put on a waiting list.
I wouldn't have made it!


Christina
AVR's 8/7/00 & 8/18/00
TMC, Tucson. AZ
Dr. Gulshan Sethi
St. Jude's Mechanical

 

[SHerrin Hutt]

Antibiotics

Antibiotics

HI Michelle,
I can tell for sure antibiotics can affect your pr & inr. I a had abess tooth was on it for three weeks till they could get it out. Then I spent a week in the hosp. afterwards to get back to normal. Then from all the Iv antibiotics I got thruss in my mouth and a yeast infection. And was amitted at the Er for being dehidraded from the side efects of the antibiotics. I never new it was going to be so much trouble getting a tooth pulled. MY pt has been a mess since my surgery 5/21/02. I can handle the pt up & down and the crazy ticking . I just thank god I am alive to tell this story. Six months ago I wasn't sure I'd be here.
I want to thank everyone for their in put. This web sight has saved my life.

 

[Gail in Ca]

When the coumadin clinic nurse would manage my dose she would tell me to hold a dose. I did as she said and both times my inr dropped to below 2.0, in just 2 days as well. Now that my cardiologist lets me adjust my own dose my inr has never been above 3.8, but if it ever gets high, I would never hold a dose. It is not the right thing for me. I find if it drops to, say, 2.3, then I must take 5mg extra that day of testing or it takes forever to bring it back up into range. I take 10mg five days and 12.5mg and 11mg the other two days. I take a pretty high dose compared to many on this site. Surgeon said I must have a good liver.
Gail