INR Rollacoster

[merryreader]

Hello & Happy almost Spring to everyone ......

RobThatsMe thought I should post this question/problem under a new thread...so here goes.....

I need some advice...ever since I had my valve replacements [ 2 st judes ] I have always been very irregular in my INR levels. I think the longest I have ever gone without changing my med levels is about a month. Lately I go from a 1.1 to 7.6 within days. I have been trying to get a at-home INR testing unit...no luck so far. So every two to three days I make my way the doctors office to get my blood drawn . I do all the approved things, ie....watching my diet ect..... but I still yo-yo all over the board.
In mid Jan of this year I had a small stoke which they are saying was due to a sudden drop in my INR level.
I'm looking into switching my cardio doc but until I can find another.....which for those of you have not had to change is a real pain in the you know what!!!!!
Any advice or info would be great.......Thanks...Stay Healthy & Happy!!!
Think Spring!!!!!!!!!

Merry

 

[Christina]

Hi Merryreader,

You better get another doctor in a hurry! These are dangerously low levels you are giving us. I threw a blood clot at 1.4 and my AVR needed to be redone, valve and everything. No fun!
I am not sure if I told you before but my insurance wouldn't pay for the Protime machine either, but I just paid for it myself. Best thing I EVER did to stay safe. It is worth every penny. I also found another doctor who seldom changes my Coumadin dosage, and I've been stable ever since.
I am going on vacation next week and my Protime comes with me wherever I go. It is such peace of mind!

Please be safe!

Christina
Congenital Aortic Stenosis
AVR 8/7/00 & 8/18/00
St.Jude's Mechanical

 

[Guest]

The first clue is the frequency with which you are going to the lab. (I am a pharmacist who has seen over 12,000 patient visits. Please look at my website www.warfarinfo.com ) The person dosing your warfarin doesn't seem to understand how it works. It takes about three days for the change made to the warfarin dose to have much effect. If you change the dose every 3 days, you are buying a ticket on the rollercoaster. If a change must be made in a short time, it is absolutely essential (no other way will come close to working) that you figure out how much warfarin you had over the past 7 days and work from there. The magnitude of the change should always be about the equivalent of one day's dose per week. If you take 35 mg/wk and need to increase the step should be to 40 mg/wk. You split one of the 5 mg tablets in half and take it on Mon & Fri. If you need to fgo down, you reverse the process. Any change bigger than that must be made only on the rarest of occasions.

The other part of the equation is consistency. Be sure that you are not taking some interacting pain medication (or anything else that interacts) on an intermittent basis.

If necessary keep a diary of everything you put in your mouth and you activities from days to day. Changes in activity, fever, diarrhea, alcohol consumption and many other things can throw warfarin off.

If you stretch out changes in doses and try to be consistent, it should iron out much of your problem.

 

[Perrster]

Listen to Allodwick

Listen to Allodwick

Hey Merry,

Welcome to the double-clicker club.

As Al suggested, you may have to get totally "anal-retentive" about the things you've been doing that may affect your INR's. i.e., writing down everything that goes into your mouth, including vitamins. I did this last year when I had some INR yo-yo problems and finally my wife hit on the fact that I had simply changed a multi-vitamin brand.

So pick yourself up a little spiral note book and sharpen your pencil! Be consistent and definitely Think Spring!!!

 

[JimL]

Merry,

I too fluctuated a lot when I began Coumadin, and every fluctuation could be tied in to a change in medication. I recorded every test and every coumadin dosage in the little coumadin booklet, and then also noted the changes in medications.
I think the most important thing in stabilizing your INR is that you have to take charge of your Coumadin dosages. Within a couple weeks of surgery, I was predicting what my INR would be, and knew when a doctor was telling me to take too much Coumadin or too little.
Could it be that the aspirin is causing a conflict, since it also thins the blood?

 

[Guest]

Despite what the sticker that is put on every warfarin prescription says, aspirin has no effect on the INR. That thinking is left from the days before Motrin etc. Aspirin was then taken in doses of up to about 30 tablets daily. It irritated the lining of the stomach and started bleeds. Then warfarin kept the bleeds going very well.

For a more thorough discussion of this please visit my website http://www.warfarinfo.com/aspirin-warfarin.htm

 

[Nancy]

Hi Merry-

I'm reposting this on this thread.

I think that pain in the b--- or not, you have to find a doctor or Coumadin clinic which can take better care of your Coumadin regulation, and I think you should do it ASAP. If you start today, that would sound about right.

Did you have a small stroke or a TIA?

A TIA clears up leaving no lasting symptoms. But there is some thinking that TIAs can cause small cumulative damage. A stroke can cause permanent damage.

My husband has had 15 or 16 TIAs. None so far after his mitral valve implantation.

Please be well and try to get started on a new Coumadin scenario.

 

[merryreader]

Thanks

Thanks

WOW...First let me say Thank You to all of you that have responded to my problem.

ok here goes I'm gonna answer/respond to all of you...lol

Christina--Yes I'm going to change doc's asap, but trying to find a local one who knows something about Marfan Syndrome. As to the home testing machine have been told they are trying to implment program here in Michigan should be up and running by June 1st, so cross your fingers for me.

Allodwick--I do keep a record of my INR levels and how much to take, and so forth. But no one has thought to tell me to keep written record of "everything". [another reason to switch docs] I went out this morning and got a notebook.

Perry--Starting today I'm writing down everything that I put into my mouth.. ... food, meds,liquids...ect. Hopefully that will tell me something. How long will I have to keep writing things down do you think?

Jim--I only take one baby asprin a day and was told that asprin only has thinning effect in very large doses. Hey I noticed that you are a fellow Michigander...cool

Nancy-- I have had TIA's in the past. What I had in mid Jan of this year was a stroke, and the MRI shows that I had another one at a earlier date too...so I'm bound and determined to get this INR level problem straighten out ASAP.

Thank again to all of you for your advice and support
Stay Happy & Healthy

Merry

 

[Guest]

Merryreader, you will only need to keep writing until you find out what has effects for you. After that you will pretty much know what is going on.

I'm surprised you did not get a response from someone about Marfan Syndrome. There are so many people with aortic valve replacements on here that some of them must have it. Maybe start a new forum, they just haven't been reading the Coumadin one. Some of us probably only read one or two regularly.

Jim, whoever told you that about aspirin has it bass ackwards. All doses of aspirin have about the same effect on platelets. Somewhere about 100 mg - 150 mg per day has the maximum effect. Doses of 81 mg per day are usually sufficient because the maximum effect does not seem necessary. Doses above about 150 mg/day exert no more effect on platelets than smaller doses.

 

[Rain]

Listen to Alodwick... I think he is one smart cookie.

Listen to Alodwick... I think he is one smart cookie.

Hello Merry Reader,

Are you taking warfarin or coumadin?? I cannot imagine anyone having more of a problem with coumadin than I have had. But then I am probably the worst possible patient. I don?t eat meals at regular times, I don?t eat the same stuff all the time, I don?t drink that same amount of alcohol everyday, or get the same amount of sleep every night... I have a busy life!! Gee whiz!! Who has time for heart problems?

I?ve been taking coumadin for two years.. And I KNOW all the things I mentioned effect my INR. I also KNOW changing from warfarin to coumadin made a big difference in my ability to regulate my INR.

I also take a baby aspirin every day. From what I understand from my cardiologist, it has nothing to do with keeping my INR in range.

Also! I used to move my doses up and down.. (Ever so slightly!) But I finally decided I?m gonna take 3 ½ mgs everyday not matter what and see what happens.... Smartest thing I ever did! I don?t stay at a perfect ?3.5' ........ I fluctuate between 2.0 and 4.0... Mostly towards the high side. I?m a firm believer in same dose every day........ Even if you have to cut them little beggers ten times!! Think about it...... they all preach ?CONSISTENCY?

I hate taking drugs and used to take the smallest amount possible to make my cardio happy... I?ve since read a lot and know that is NOT a good idea. Drugs are a drag... but clots are worse.

Wishing you lots of good luck.... Keep that dog out of the flower bed.... it?ll raise your INR every freakin time!

Rain

 

[JimL]

Al,
Thanks for straightening me out on that little piece of misinformation I picked up somewhere.
BTW, I had dental work this week, and I called my cardiologist ahead of time to see if there was any interference with coumadin from antibiotics or pain killers. Among other things, the cardiologist said no aspirin.

 

[Guest]

Very interesting. I think this was the best advice. However, it seems that it is given far too infrequently and when it is , then dentists are afraid to go along with continuing the warfarin.

 

[Gail in Ca]

I noticed that my biggest inr swings were caused by dosage changes. If the coumadin clinic nurse found that I was out of range by a little, she would change my dose, and sometimes have me skip a dose, which I found dropped my inr too low within 3 days. ( from 3.8 to 1.7 as example, I was freaked out to say the least!)
Now that my cardio lets me adjust my own dose I have had no more major inr problems. Only twice just 2.3 and never lower or higher than my range.
Gail

 

[Zipper]

Hi's and Lows

Hi's and Lows

Hi Gail,

My INR usually is stable but once in a while it'll go low (today 2.18).but my Cardio just keeps me on the same dosage unless it's Really out of range..It seems to always align itself. I believe if he changed it everytime it varied a little high or low, I would be on that RollerCoaster. I may have to test sooner if it's not exactly within range 2.5-3.5 but he holds off changing anything if it's 'just' below or 'just' above..and both have happened.

I've only changed when I've needed a procedure..dental cleaning/root canal/Ultrafine needle biopsy for thyroid..that sort of thing...it's worked well for me.

I think I've eaten more greens (avacados/lettuces. etc) recently due to it being Crab season here in Ca. and I love to indulge!

So...back to behaving and not indulging to keep it level. I sure wish there was a 'food' to bring it up quickly as there are those that can bring it down! But as Al has said.."Nope"...LOL!

Salud,

Zipper/Joan

 

[merryreader]

Still ridein that dang coaster

Still ridein that dang coaster

Unfortunately I'm still riding that dang coaster I had my last pt check on Thur 3-14-02 my INR was 1.1 So the nurse had me switch doses again. Had to take 15mgs on thur 3-14-02 12.5mgs on Fri & Mon and 10mgs on Sat & Sun. I go back tomorrow morning for another pt test.

Last Thur I started writing down everything I eat or drink...maybe there is something that I'm doing that is causing this darn ride. If there is I have no idea what it could be...but I guess time will tell.

Stay happy & healthy!!!!!!

Merry

 

[Nancy]

Dear Merry-

This doesn't sound good! Have you made any progress in looking into another testing facility?

I hope allodwick comes along with advice on this one.

Sounds like the changes they're making you do are way too radical, I hope Al can shed some light on it.

 

[Guest]

If, I didn't say so before, write down the INRs, the date they were done and the changes that was recommended. Do this in addition to writing the other stuff down, too.

 

[merryreader]

Help!! I want off the dang coaster

Help!! I want off the dang coaster

Ok went back to the doctors today [tues 3-19-02] Inr was 1.3 they switched my meds again. had to take 15mgs today and 12.5 tomorrow have a re-check on thur 3-21-02

I have written down every blessed thing that I put in my mouth. Tech looked over the sheets today and found only 2 things that she said were high in vit K. I had cole slaw one day and cabbage on st pattys day, but in both cases serving was less than a cup.
But even if I had eaten the whole head of cabbage I don't think it would have mattered cause I went from a 1.1 INR on thur 3-14-02 to a inr of 1.3 today.

Am staring to think that this is going to be a never ending battle


Stay Happy & Healthy

Merry

 

[Nancy]

Hi Merryreader-

It takes 3 days for the dosage you take today to react enough to show in the INR. That's why people get trapped in a nasty rollercoaster like you're experiencing. If the person doing your testing isn't really confident about what they're doing, they will adjust it too much and throw it off again 3 days hence. A long time ago, Joe had a doctor that used to do that. He really didn't understand and was such a curmudgeon, that no one would dare question him. We got that changed.

Allodwick will explain it much better than I ever could.

 

[Guest]

Nancy, there is no better explanation.

Frequent changes in the warfarin dose are the major cause of the rollercoaster. When you test, be sure that the person considers how much you took over the past 7 days, not just since the last check. The new dose should be based on that, not just what you took over the past 3 days.