PT/INR part 2

[Kathy Canistro]

Thanks to everyone who helped out. It seems you all were right. When I got the 3.8 pt/inr and was told to hold the coumadin for 2 days and start back on 4 mg and retest my pt/imr did go way down. Today it is only at 2.0 and the doctor's office wants me to take 5 mg today and 4 tomorrow and alternate between 4 and 5 and retest in 2 to 3 weeks. I am going to follow the 5 and 4 mg deal but I am retesting in 1 week. I have not been able to get this right since my surgery for the 2 mechanical valves in June.

It seems I am the only one concerned, I did call my surgeon to see if I am making a mountain out of a molehill and he said NO to stay on them and that os why I will retest in one week not 2 or 3 like my primary care's office said.

It sure is an ordeal, I thought the surgery was my big hurdle, this is so much worse,

Does anyone have any suggestions of what I could do differently?

Thanks Again,
Kathy

 

[geebee]

Kathy,

What dose were you taking when you had the 3.8 reading?

 

[Kathy Canistro]

Pt/inr

Pt/inr

I was taking 5 mg a day when I got the 3.8 reading.

 

[Ross]

You were taking 5mg times 7 days before to be at 3.8 and now they want you to alternate 5 and 4? 7x5=35mg 5x4=20+4x3+12=32mg per week. Don't be surprised if it's low again. The 35mg per week dose should never have been touched and if it were me, that's what I would resume.

 

[geebee]

Kathy,

Was the 3.8 reading the only one that was "off" since you have been taking coumadin. What was your INR running prior to the 3.8?

 

[Guest]

Can you get a home testing unit? Then you can learn what works for you and dose it yourself. Just about anyone who can get on the internet can learn to dose their own warfarin.

 

[Kathy Canistro]

pt/inr

pt/inr

Hi Everyone,

Thanks for the advice. I have been at 2.5 only a couple of times and my doctor said to retest in 2 weeks and I thought I was finally there and 2 weeks seemed so good. But on the second week I was back to 1.9 and then my coumadin was increased from 3 mg to 4 mg amd the retest was was 1.8

The highest reading I got was the 3.8 and they seemed to freak out. It's still so new to me that I am actually scared stiff to think I could manage it.

What will happen if I just started the 5 mg a day like when I got the 3.8 reading? I really wish I could get this straightened out.

My primary care is SO difficult to even get a hold of, around here unless you have a regulary schedule appointment you are told to go to the ER. Those guys have a huge load of patients out there and I fear all the germs I get exposed to. I did have 2 rounds with the endocarditis and that was really unpleasant not to mention IV antibiotics around the clock for 4 weeks.


We don't really have a lot of doctors that have any experience with the coumadin and there is no coumadin clinics just the regular lab.

Any help you guys might have would be appreciated.

Thanks
Kathy

 

[Ross]

I'm going to let Al talk with you on all of this. From my point of view, that 5mg a day deal was dead on target. They should never have monkeyed with it.

 

[geebee]

Kathy,

I think you should go back to 5mg daily. Retest in one week and go from there. Let us know what your INR is and we can help guide you from there.

BTW - I think a home tester would be great for you if you can swing it.

 

[Karlynn]

I'm going to let Al talk with you on all of this. From my point of view, that 5mg a day deal was dead on target. They should never have monkeyed with it.

I agree totally. 3.8 - particularly with 2 mech valves, is a non-event and your doctor should have treated it as such. The holding for 2 days was, as I've already said, malpractice and shows their gross lack of knowledge on the subject.

I think your main problem with your INR is who's managing it. You will continue to go all over the place if you rely on this doctor and his office to do your management. Please find a Coumadin Clinic in your area if you don't feel comfortable managing it yourself.

I also don't like the every-other-day scenario. I realize that some people do this, but you should be looking at a weekly dose and dividing that dose as equally as possible among the 7 days. This is why many of us don't always take the same dose every day. I take 68 a week, and the best scenario for me to take that amount is to take 9 mg MWF and 10 T, TH, S, S. Your doctor may be telling you to do this every-other-day thing to make it easy to remember. But truth be told, I think it's harder, if you aren't using a pill caddy, to remember whether you took 5 last night or 4. In my case, if it's Monday, I know I take 9, or Tues. 10 etc.

I agree with the rest - if it were me, I'd go back to 5 a day and test in a week.

 

[catwoman]

Kathy:

SINONDS SINON REGIONAL CANCER CENTER
Phone: (978)343-5147
275 NICHOLS ROAD, FITCHBURG, MA 01420

is listed at www.acforum.org -- an organization of anti-coagulation care providers. Fitchburg isn't far from Leominster. (I'm not sure why a cancer center would have a Coumadin clinic but perhaps it's affiliated with a regional hospital.)

I've had INRs of up to 5-something and the most I've done is hold 1 day. I no longer hold 1 day; I just halve my dose and continue on with regular dose. I take 6.5 X 7, so I don't want to hold a dose and then see my INR plummet needlessly.

 

[Nan]

Hi Kathy, just wanted to add a word of support.....it will be OK....you will end up in a range, not at one number, and a 3.8 is really not a bad INR with 2 valves. Do you know what range your pcp wants you to be in? I am not sure, but it seems to me that I have read somewhere that 3-4 is one range used perhaps for a mechanical in the mitral position?

I echo everyone, if you can get your own unit you will feel so much more comfortable.

But in the meantime, if the Fitchburg coumadin clinic would take you and you can get there, that would be so much better than what you are going through now.

Hang in there!

 

[Georgia]

I have a mitral mechanical and my range is 3 - 4. My biggest problem is reminding the nurse who calls with my results that I have a high range. Once the doc even made her call me back and apologize that she'd told me to hold when my inr went to something like 4.3.

Ditto all that you shouldn't mess with your dosage for a 3.8. Shame shame shame on your doc. He's unnecessarily started the dreaded inr swing and ought to be censured.

 

[Kathy Canistro]

pt/inr

pt/inr

Thanks to all who have helped me. I will try that coumadin clinic suggested. I know that what was the Burbank Hospital in Fitchburg has been bought out by U Mass and I beleive they have just about shut it down, still it is worth checking out. I have no problem managing this myself, I probably can not do worse than what my primary care just did. I will never allow that to happen again.

I believe a clinic that specifically handles coumadin and has patients that have mechanical valves would be my best bet. It is foreign to my one horse town, we have 2 cardiologists and one is getting ready to retire and the one that I have has been my doctor for 25 years. I do trust him. It is his staff I have the problems with.

I will keep you updated. Thanks a million for all of you!
Kathy

 

[Guest]

I agree that the 3.8 was just about perfect. I can't imagine the circumstances under which a 2-day hold would be justified for an INR of thei range.

 

[RCB]

Can't argue with Al

Can't argue with Al

I agree that the 3.8 was just about perfect. I can't imagine the circumstances under which a 2-day hold would be justified for an INR of thei range.

For some, 4.0 is the top of the range. The test could be off too.
You need to do your own testing if you can't find a clinic. Good luck