I just had a fight on the phone with

[Jackie]

Kaiser's Anticoagulation Clinic, in front of my Grandson. He said Grammy I bet they were laughing saying, you really don't think we now that?
Today ............. 1.2, 1.5 l.8 take 5 tonight and go to lab in the morning
Week of 6/25 - 3.0 4mg 3 days 5mg 4 days
Week of 6/18 - 3.2 4mg 3 days 5mg 4days
Week of 6/11 - 4.3 4mg 3 days 5mg 4 days
Week of 6/5 - 4.3 4mg 2 days 5mg 5 days Hold 1mg that day
Week of 5.28 - 4.5 4mg 2 days 5mg 5 days
Week of 5/21 - 3.2 4mg 2 days 5mg 5 days

Last week I requested that I go back to 4mg 2 days and 5mg 5days. "Oh no stay on the 4mg 3 days and 5mg 5dys." I told her that I drop so fast and we went back and forth for awhile and I finally agreed. Then today look where it is. The Pharmacist said that I must come in for a lab test tomorrow because she does not think the readings are correct. How could be so difference?
My answer was they are not that different. Oh yes, that is a great difference. We went back and forth a while with that and my Grandson is sitting there rolling his eyes.Finally she said that's why they are not reliable. I said well I'm not sure the lab results are right, finger pricks and venous draws are two different kinds of blood and will differ some. Take Mg tonight and come in tomorrow. I asked if the test would be done there or transported to a different Lab to 50 miles away. Well tomorrow I will say for it to be done here. If I have to come to the lab I want to know it will be done there. Oh that can't be done, that is only for people who are not stable. I would rather be considered stable on the high side instead of the low side.

Has any one had experience with having Medicare covering their INRatio and Test strips. Will Medicare agree to self dosing? I am wondering because I must call in to QAS every week with my result and they send a fax to Kaiser with the information.

I know my body a lot more than Kaiser Pharmacists and hate to fight with them all the time. I have repeated, "it is easier to replace blood cells than brain cells" They really don't like it buy I can't help it. Today I told her that I would rather have it a bit high that low enough to have a stroke.

Any suggestions?

 

[Ross]

4x3=12+4x5=20...12+20=32mg
2x4=8+5x5=25... 25+8=33mg

There is really no difference in these two. 1 mg is not going to cause a change.

If it were me, I'd drop it to an even 30mg a week, retest in a week and see if your too low. 32mg seems to be your sweet spot or very close to it, which is why I'd try 30mg. Do you have any 2mg pills to work with?

Medicare will cover the cost of the meter, but it's a screwy situation where your Doctor has to buy it and they reimburse him for it. Medicare doesn't need to know anything about self dosing. All they require is weekly testing.

 

[AgilityDog]

Do what I do. Get the algorithm, decide what is best to do for yourself, and do it.
You can either tell the clinic what you are doing, and ignore what they say if they disagree, OR just agree with whatever the clinic tells you to do, and then do what you want to. When you have been stable more or less for a while, you can let them know what dosages you are taking, esp. if you need a dr. to renew RX or make another dosage available to you.

Basically, it appears you are dealing with idiots.

I've just gotten to where I call up and tell them what I'm doing and tell them not to bother calling me back. I have a supply of 3 mg and 1mgs, and my Dr will call in refills of whatever I need if my Rx runs out (he gives me a year's worth). My nurse/doctor is fine with me self-managing but then, I'm not on Kaiser.

 

[Jackie]

I just received and message for the clinic telling me that my INR in high 3.6, so instead of taking 5mg tonight only take 2mg. My range is 2.5 to 3.5. Have they lost their minds? I used Inratio when I got home 2.9. I had just walked the mall and had lunch with a friend.

I don't know what happened yesterday, 1.2, 1.5, and 1.8 on INratio, thats why I had to go to the lab today. Maybe the two Margaretta's I had last night raised my INR today.

Does any on know if there is any connection between sweating and INR results? I sweat profusely, it drives me nuts and is most embarrassing. My PCP says he does not now what caused them because all my tests are normal. My Neurologist put on Effexor but PCP took me off because he said some of the side effects are sweating and being tired. Who knows, I must be some kind of medical wonder, nobody knows what to do with me.

 

[Ross]

I just received and message for the clinic telling me that my INR in high 3.6, so instead of taking 5mg tonight only take 2mg. My range is 2.5 to 3.5. Have they lost their minds? I used Inratio when I got home 2.9. I had just walked the mall and had lunch with a friend.

I don't know what happened yesterday, 1.2, 1.5, and 1.8 on INratio, thats why I had to go to the lab today. Maybe the two Margaretta's I had last night raised my INR today.

Does any on know if there is any connection between sweating and INR results? I sweat profusely, it drives me nuts and is most embarrassing. My PCP says he does not now what caused them because all my tests are normal. My Neurologist put on Effexor but PCP took me off because he said some of the side effects are sweating and being tired. Who knows, I must be some kind of medical wonder, nobody knows what to do with me.

As far as sweating, I'm there with ya. It's terrible, people think your about to croak on em.

As far as I know, no, but usually if your sweating, you've done some excercise of some sort, so maybe the extra work cause you to metabolize faster too. I don't know, I'm just thinking.
I wouldn't change a thing. I'd wait one more test and if it's higher then 3.6, back off maybe 2 mg and check again in a week.

 

[Jackie]

As far as sweating, I'm there with ya. It's terrible, people think your about to croak on em.

As far as I know, no, but usually if your sweating, you've done some excercise of some sort, so maybe the extra work cause you to metabolize faster too. I don't know, I'm just thinking.
I wouldn't change a thing. I'd wait one more test and if it's higher then 3.6, back off maybe 2 mg
and check again in a week.

Ross, I don't sweat because I move, I sweat just sitting. I sweat 24/7 hot or cold,, dripping down my neck and making my eyes sting. I have decided maybe I sweat so I can eat more salt haha. Do you have any idea why INR would be 1.5 on day and without changing anything back up to 3.6(Lab and 2.9 Inratio) 24 hours later?

 

[Ross]

Ross, I don't sweat because I move, I sweat just sitting. I sweat 24/7 hot or cold,, dripping down my neck and making my eyes sting. I have decided maybe I sweat so I can eat more salt haha. Do you have any idea why INR would be 1.5 on day and without changing anything back up to 3.6(Lab and 2.9 Inratio) 24 hours later?

Yeap, the 1.5 test was a bogus result! I'd believe your INRatio before I'd believe the lab. All the more reason not to change anything, if your meter said 2.9.

 

[Bina]

I think I heard somewhere about an actual condition causing profuse sweating.
Try doing a google search. And in the meantime make sure you don't get too low on minerals.

 

[SHerrin Hutt]

Pt

Pt

Hey Jackie, I'm having trouble with sweating too! It is terrible!I've talk to pcp & female dr. Did not get any help from anyone. I feel like crap! I sweat from my head to my feet.No meds have changed. Had to have a heart cath last week and have been getting my PT back to normal for me. I too would rather have mine on the high side. I have been controling mine for 7yrs. Humana bought the first machine and medicare payed for the second one. My numbers have close to the same as the ones at the PCP. They have the same PT machine I have. Let me know if anyone can tell what is causin the sweating it is driving me crazy!!!!!!!!!!!!