Very Confused... I can't stay in range...

[RickKiem]

For the last several months I have been struggling to keep my INR in range. My range is 2.5 to 3.5. With the strong history of debilitating strokes (two sisters and father) in my immediate family I really get worried if I get even slightly low.

After my surgery I really struggled to stay in range. I had to gradually increase over the first couple of months to stay in range.

I have been taking 5mg SSTT and 6.5 MWF. When on this dosage my INR will slowly, over a couple of weeks, climb until it levels out above 4. I have tried to just maintain this dose but it stays high and I start bruising all over.

The last three times I have adjusted my dosage I have reduced my W dose to 5mg. This is less than a 4% reduction but after a couple of weeks I am back out of range. Usually just slightly, but have been as low as 1.9. When it gets low,I wait a week and if it is still low which it has always been, I add the 1.5mg back into W.

All the fluctuations, both up and down, are gradual but this cycle has repeated three times now over the past 3 and a half months. I check my INR with a Coaguchek at least weekly and my diet, while not what the doctor ordered is consistent, no supplements, etc.. I am not sure what is going on. Anyone have any thoughts?

Rick

 

[Guest]

"at least weekly". You are probably changing your warfarin dose too often. This is not unusual when people get anxious over getting out of range. However, it takes some people a week for the effect of the last dosage change to have its full effect. Keep a record of what you take every day on a calendar. When you check the INR, make any dosage change based on what you actually took over the past 7 days. What follows is not a criticism of your dosage schedule because I use exactly the same pattern on my patients. However, when you look at the last change and take the actual dosage of the past 7 days into account, you will find that there are times when 4 or 5 days pass and you have made no change in the total dose or else one that was so small that nothing happened. Then you make another change and the INR starts fluctuating. Try this method and see what happens.

 

[Ross]

Rick I've found that what Al is saying is so true. I was doing what you are now and getting the same results. I finally said the heck with it and didn't fiddle with the dose and watched it over 2 weeks. It's right in the ball park now with very little change required.

 

[RickKiem]

I have been waiting several weeks before making the dosage changes. The pattern is that as my INR moves up I do not change the dose until it is 4+ for two consecutive weeks then I reduce by 1.5mg which is less than 4%. Then my INR will slowly drop over the next several weeks until it falls below my range.

I do not add back in the 1.5mg until I have been out of range for two consecutive tests. If I am low I usually test again in 3 or 4 days. Then it heads back up over the next several weeks and I start all over again. This has happened at least three times over the last three and a half months. Each dosage change is at least 3 weeks apart. It does seem to fall faster than it goes up.

I guess I don't understand why such a small change in my weekly dose can have my INR swing from around 2.3 to 4.3+.

Anyway, Thanks for both of your comments. I guess I will wait just a little longer before making the changes and see if things will level off.

Rick

 

[ALCapshaw2]

Out of curiosity, what dose pills do you use to achieve 6.5 mg?

Based on your schedule of 4 X 5 and 3 X 6.5 that comes to 39.5 mg per week.

Wouldn't it be easier to take 4 X 6 + 3 X 5 which comes to 39 mg per week with standard dose pills, and *might* even prevent the 'upward creep' you reported at 39.5

'AL'

 

[RickKiem]

I have 5mg and 3mg tablets. I am breaking the 3s in half. These are the scripts that I already have but could get the Doc to write new ones if this may help. It is just strange because you could graph the INR changes and it would look like a nice gentle wave.....

 

[Ross]

I don't know Rick, might be something that you'll just have to live with. Sounds to me like your doing the right things and it's just ebbing and flowing on ya. It's strange, but it's happened to me also. If you go over 4, I wouldn't wait to make a slight drop in the dose though. Remember also, the higher the INR, the less accurate the machine is too.

 

[RickKiem]

Thanks Ross! I usually know when I start getting close to 4. I really start to pick up some bruises. I think they are from my boys treating me as a punching bag. I've had two blackeyes in the last six weeks and I think my coworkers think my wife is abusing me. Thanks for sharing your thoughts on this and I hope things are going good for you these days.

Rick

 

[Guest]

If the range of variation is 2.3 to 4.X, I probably wouldn't worry about it much. If you know what is causing the bruises, I tell people to not be too concerned about them. It is the bruises that have no known cause that are worrisome.

I try to not let people get more than 0.3 units below their range and not go above 4.9. I have statistics to show that this works pretty well. Of course you have to always take the individual into account. On the surface, it doesn't sound like you have much to worry about.

 

[RickKiem]

Al,

Thank you so much for talking this through for me. I try to keep up with your posts on this forum and feel you provide some great insight into (usually much more informative that the clinic I was using before receiving my machine) the methodology of Coumadin management.

I know that things will flucuate, but just find it frustrating that it is swinging so widely on such a small change. It really does not worry me to much when I get a little high but man do I start to look like i've been beaten on. I know why I get most of the bruises. Playing with my boys for one thing, and I have also been spending quite a bit of time at the ranch getting things in order for Fall.

I really do worry when I get low. I am all to familar with the devestating effects of stroke and never want to have this happen to me or put my wife in the position of having to care for me if this does happen. My mother had to raise the kids while working and managing the care of my father who, before his death in '79 suffered three debilitaing strokes. In '95 my oldest sister suffered a massive stroke and after spending about 10 months in various hospitals including rehab at TIRR she moved into my mom's home forcing my mom to retire early in order to care for her. While this sister was in the hospital, one of my other sisters, who was pregnant, suffered a small stroke which put her in the hospital until she delivered due to heperin therapy. About 7 weeks. I know this sounds like a soap opera but it is reality for my family and I have a great fear of adding another chapter to it.

So to make a long story end.... My wish is that MY INR will steady a bit so that it is not falling out of range. I would stay on my higher dose if I wasn't getting so much bruising. In the end I guess I am greatful that I can at least have control of this situation. With my INR shifting so widely on small changes I would hate to see what would happen at the clinic as they like to make changes of 15%+ when you get out of range. Whoops, I am rambling....

Rick

 

[Karlynn]

Rick,
My INR has rarely been stable. I usually have to test every 2 weeks. If I go 2 month w/out having to adjust my dose, it's a cause for celebration. Been doing this for almost 13 years now. Home testing is the way to go. It was a real pain when I'd have to do the lab trips.

 

[Rain]

I feel you pain.

I feel you pain.

Rick,

My INR has fluctuated since the day I started eating rat poison. 1-7-00

I wonder if the reason our INR fluctuates more is because it takes a smaller dose to keep us in range? You think there?s any truth to that, Al?

I take 21.5 mgs a week. When I tweak my dose I try to only do it by .5 a week. I don?t even know what percent that is... but it works for me... usually. Although, a month or so ago I tested at 1.8.... right after the test I took another full 1 mg!! And over all eventually have creeped my dose up a full 1 ½ mg over the summer. But I have a garden and eat LOTS of veggies in the summer. And I spend a lot more time outside in the summer, and I get more exercise in the summer and, and, and.... lol I swear everything has a direct impact on my INR. Everything.

I?ve blamed my shifting INR on everything from the sun coming up to my dog sleeping in the flower bed....... I'm admittedly a bit of a rebel when it comes to all this being sick, taking meds, etc.... but I've tried really, really hard to be a good girl and it STILL fluctuates! I honestly wonder if it didn't get a little easier when I quit worrying about what went in my mouth.

The trick is to get it fluctuating between 2.5 and 4.0! I feel a wee bit of joy when I?ve managed to do that for several months in a row!!

Best wishes, Rick! I feel your pain! Maybe there's an INR dance we should be doing... sorta like a rain dance or something...... hmmm. Now there's something I hadn't thought of before.

 

[catwoman]

Rick:

Consider getting one of Al's dosing charts -- a really big help on what to do if INR tests low or high, how much is something to worry about, etc.

BTW, I have scrips for 10, 2, 5 and a new one for 1's. I split the 10's and 2's to 6's, or can use them as 7 or as 5. PCP wrote a scrip last week for 1's so I can use them as 1's or .5mg.

I take 6mg daily. Rarely have to bump it down or up 0.5 mg. My INR is 3.0-4.0 most of the time.

Marsha

 

[Rush20]

Rick, sometimes alcohol can have an adverse effect. I'm not a big drinker, however I play mens softball two nights per week during the summer. It was about mid-June that my INR started jumping around. After one month, my wife thought it might have something to do with the 2-3 beers I had post-game.

It wasn't so much the 2-3 beers, rather the fact I would not have any alcohol the other nights, i.e. on and off. I laughed and asked whether or not it would be better to drink 2-3 beers every day and my cardio nurse matter-of-factly said "Yes - it would be better".

Over the past few weeks, I cut down on the post-game beer and tried to maintain a consistent intake. Usually either 1 beer/day or 1 glass of wine with dinner and my last two tests were both 2.9.

Just a thought....

 

[atydev]

Me too

Me too

I can't keep my INR in range either. I had my surgery 6-21-04 and have only been barely in range 3 times since I have been on coumidian. I am always low. I am now on 10mg S,M,W,T,S and 15mg on T,F I will check it again on next friday to see if this worked. I have been bruising badly and was surprised it had been low this last time but I was 2.2 my family say's this just confirms what they always new about me. I am strange. hehehehehe. .

 

[Guest]

Atydev,
For someone who is taking a fairly large dose, as you are, it is not unusual for it to take 3 months to get the INR up into range. First, it is because we never start with high doses and it takes awhile to get convinced that you need that much. Second, you need high doses because your body metabolizes warfarin very quickly. If you miss one dose, your INR will drop to almost nothing. This adds to the difficulty in adjusting high-dose people.

 

[atydev]

Al

Al

Al I have never missed a dose I promise even my doctor accused me of not taking it. I am not fond of the thought of another stroke. I will find out next friday if this dose will do for awhile. So far it has been an increase every other week.

 

[Guest]

I did not mean to imply that you had missed a dose. I guess I wasn't clear because I was thinking about things that might have made it hard to get you regulated. Just the fact that you need more than 10 mg/day makes it hard to get the right dose. I never put somebody up at that level without being very careful about getting levels and increasing slowly. It is burdensome for the patient but I could never just start someone out at 10 mg.

 

[atydev]

Al

Al

No I understand my doctor also had the same reaction. I guess I am just one of the unusual cases where I have to take large doses to stay in range. From most peoples reaction I feel that such a large dose is unusual. Like my mom say's I ain't right

 

[Valve-Viking]

I also need a fairly high dose, 8.75 mg daily in a week. I had my surgery
in march ´03 and I guess it took me about 5-6 months to get my INR stabile,
since then I´ve pretty much stayed on the same dose. So I guess when you
need a high dose, it takes longer time to adjust it. It was driving me nuts
in the beginning too, but you just hang in there and I am sure things will
get stabilized soon.

/

Martin