Because one doctors says it is "close enough" doesn't mean it is accurate. When the manufactures say it is inaccurate and your own wife's tests are inaccurate why do you sit here and argue the point? To prove you are right? You aren't right, the lab tests and the manufactures have already proved that point.
OMG I NEED ANSWERS ;( I just found out that i have anti-phospholipid and anti-cardloilpin (ACA) ( APS) Can some one tell me what does it do to you,and my symtomes are am very much in pain at night,like in my joints! I have a docters apointment on the 15 of july,am im so nervis about this:( Im a 38 year old mom,and i have no one to talk to about this! Can PLZ someone let me know about this LUPUS thing ? Thanks alot SUE :\
by 646879: Why does the APS foundatilon say that home monitoring of inr is not advised? My wife has found this to be most beneficial even though her unit is consistantly higher than her reading from the emergency room....so we subtract the systematic difference
Also the problem is there are lots of people with APS doing the exact same thing you are doing. It is dangerous. This isn't the first time and I am sure it wonn't be the last time I read that someone was subtracting off their reading.
You need to approve me as a friend because I can't message you. That was the same problem I was having the other day to give you more information why I said where to find it.
And I truly have it...all cited and written by doctors and the manufactures themselves. Look and the inserts in the strips. Read the fine print.
I did review some of the articles....only one really addressed the accuracy problem...In my mind immediacy may outweigh the need for dead on accuracy...but we have other issues besides aps which mean we need to be at about 4 inr...thank you for your reply and for the aps website....I wish there was a better more concise exposition of the problem from the hematology folks.
Several of them do, so you didn't read them all. We have articles for every finger stick machine on the market...home & professional. And information that comes direct from the manufacture. And there are several articles.
What is needed is a PDR style black box warning on the finger stick unit....to clearly delineate sources of error. After reading more, I believe that there are too many sources of error here.
Exactly! But there are soo many people who do not believe what we are saying even with the cited information we provide. Drives me batty. They are just not safe for APSers to be using.
i agree that sole reliance on finger stick home units is not wise....DR Ortels post on the apsfa website does however indicate a role when tempered by frequent crosschecks by hospital tests....as you do yourself. So i don't think that a blanket condemnation of home monitoring is needed, just know that you must be double checked. I am still not comfortable that even the hospital plasma based tests are that accurate after reading further.
I haven't used a finger stick in machine in YEARS. After having a STROKE due to a bad reading, there is no way I would use one again. My INR was drawn and a Factor X was done to compare. The Factor X matched the lab draw. The machine was WRONG - GROSSLY WRONG. Good Luck and hope your wife doesn't have a major issues using these machines. The inconvenience of going to the lab every week is worth it to me. I get accruate INRs. My life is worth it.
Also, nice that you removed your original posts stating that your wife's machine was off by .8 and you were subtracting that from the reading on the finger stick machine. That is ok, I have the emails stating what you and will share them if need be.
by 646879: difference seems to be the same everytime we do it....i understand this is a complicated subject and not many docs do well with this condition....
Since 646879 deleted his comments that showed how off his machines were I am putting them back there and quoting him. I am tired of people deleting their comments when they were corrected with the truth and the truth of how innacruate the machine IS being removed.
According to one of Ortels articles on your website this method may be close enough for some patients...most of the time......so there are some inconsistencies in articles and on your website. I am uncomfortable with this myself as you know. For a large fraction of the patients this will not work and is not to be used exclusively as the only check.
@646879 Because one doctor says it is "close enough" doesn't mean it is accurate. When the manufactures say it is inaccurate and your own wife's tests are inaccurate why do you sit here and argue the point? To prove you are right? You aren't right, the lab tests and the manufactures have already proved that point. Eventually, your math of subtracting X amount will catch up with your wife and cause a massive bleed, stroke or her death. Plain and simple. Done beating around the bush with ya.
One, YouTube will not let you post links. But I will email you through YouTube with the links. But I did say they are on the APSFA links page.
Two, does your wife test positive for the Lupus Anticoagulant? 0.8 is a HUGE discrepency. That is the difference between holding or increasing the dose depending on which direction you are going.
by 646879: i don't for one minute advocate that you do what we are doing , but if you truly have medical journal articles I would be most interested in seeing them...email me link or something....All her docs know this is what we are doing....so educate them/me....when comparing to ER blood draw we are always o.8 higher than them....where are your articles????
Why does the APS foundatilon say that home monitoring of inr is not advised? My wife has found this to be most beneficial even though her unit is consistantly higher than her reading from the emergency room....so we subtract the systematic difference
Nice so you subtract the difference and is the difference the same each and everytime? Do you do a huge mathamatical equasion to come up with your number. The manufactures say they are inaccurate, there are research papers saying there are inacurrate.
Finger stick INR machines are not accurate in APS patients. See the links page on the APSFA page. Read ALL of the disclaimers. Do you WANT your wife have a stroke. It is only time.
Contd: The facts are that the finger stick machines are not accurate in APS patients. There are patients having strokes, other clotting events and dying because of the inaccuracies of those machines and yet this doctor still pushes them. Why?
Contd: I have had reps who sell these machines come up to me at conferences telling me that will personally not sell these machines to APS patients because they have gotten to many calls from family members that the client died because of a false reading. Of course if their company knew they were saying this they would be canned immediately. Are the deaths just flukes, are the strokes just flukes? I had a stroke because of the inaccuracy of that damn little machine that is being pushed.
Contd: I am not the only one having problems so why isn't that information being disclosed? It is disclosed by the manufactures, it is being disclosed by other researchers and other organizations.
So continue doing your math to figure out what you think the INR is. When she strokes out, has a massive DVT or dies, don't say the APSFA didn't warn you, don't say the manufacture didn't warn ya. Ignorance isn't necessarly bliss!
You answered your question within your comment. "even though her unit is consistantly higher than her reading from the emergency room....so we subtract the systematic difference" -- WHY should you need to subtract anything? And what if that day the machine is accurate and you still subtract?
The machines are inaccurate for APS patients. The companies have it listed in their inserts.
If you feel comfortable using a machine that is consistently WRONG, then have at it...it's your life.
Yes, this person answered his own question. If these machines are so darn accurate you shouldn't have to add or subract anything. They should be right on. And who is to say that little machine is the one that is right especially when it clearly stated by the manufactures that the machines are inaccurate in APS patients. And right it is their life, when they stroke out, don't come crawling to me.
I suggest you reada the APSFA's links page regarding the finger stick machines. Our sources are clearly cited. We truly hope you wife doesn't have a major incident due to the use of that finger stick machine. Does her doctor know you subtract the difference?
by 646879: I did review some of the articles....only one really addressed the accuracy problem...In my mind immediacy may outweigh the need for dead on accuracy...but we have other issues besides aps which mean we need to be at about 4 inr...thank you for your reply and for the aps website....I wish there was a better more concise exposition of the problem from the hematology folks.
Doctors following the guideline and prescribing only Aspirin should be charged with murder when that patient has a massive stroke or organ failure from the disease. Then (and only then) would the doctors re-evaluate this antiquated 'guideline' (it is not even a rule, just a guide). The trouble is most are too stupid to think for themselves and have to follow others, like little lost sheep.
I'm going to add the first part of his comment so the comment is not misunderstood:
"Aspirin is the only way forward for a few patients who have a few symptoms, positive blood work and who have never had a clotting event. Once that patient has had a clotting event they have to be on Warfarin for life."
Aspirin is the only way forward for a few patients who have a few symptoms, positive blood work and who have never had a clotting event. Once that patient has had a clotting event they have to be on Warfarin for life.
see next comment: ----
Those on Aspirin alone are just waiting to have a life-threatening clotting event before their doctors can follow the idiotic 'guideline' that a clotting event has to happen before they use prophylactic therapy of Warfarin.
"using aspirin is the only thing you have to do". I am sorry but you are a fool for saying that. My mother died from APS and I was diagnosed with it 5 years ago after seizures and tia's. How dare someone say such an idiotic thing and make a something serious into something trivial.
The treatment of choice for patients with APS who have had a blood clot is warfarin. For women with APS & recurrent miscarriages who have not had a prior blood clot, the use of LMWH during the pregnancy significantly increases the likelihood of a successful outcome. Some individuals may have elevated antiphospholipid antibodies but have no clinical manifestations of the syndrome. These individuals are usually treated with aspirin.
I have this disease. I was diagnosed when I was 22 but had it all of my life. I'm 37 male. I needed major operation on my lungs because they were filled with clots at 22 years of age.
Because one doctors says it is "close enough" doesn't mean it is accurate. When the manufactures say it is inaccurate and your own wife's tests are inaccurate why do you sit here and argue the point? To prove you are right? You aren't right, the lab tests and the manufactures have already proved that point.
Eyzrbrn 1 year ago
my classmate from school, a guy has this, we are pulling for him to recover and be able come back to school
Collin550 2 years ago
OMG I NEED ANSWERS ;( I just found out that i have anti-phospholipid and anti-cardloilpin (ACA) ( APS) Can some one tell me what does it do to you,and my symtomes are am very much in pain at night,like in my joints! I have a docters apointment on the 15 of july,am im so nervis about this:( Im a 38 year old mom,and i have no one to talk to about this! Can PLZ someone let me know about this LUPUS thing ? Thanks alot SUE :\
xSuediox 2 years ago
Have you looked at the APS Foundation of America, Incs webpage and joined their support forum?
Eyzrbrn 2 years ago
by 646879: Why does the APS foundatilon say that home monitoring of inr is not advised? My wife has found this to be most beneficial even though her unit is consistantly higher than her reading from the emergency room....so we subtract the systematic difference
Eyzrbrn 2 years ago
Cant send you the message if you don't make me a friend. You haven't read all the articles.
Eyzrbrn 2 years ago
Also the problem is there are lots of people with APS doing the exact same thing you are doing. It is dangerous. This isn't the first time and I am sure it wonn't be the last time I read that someone was subtracting off their reading.
Eyzrbrn 2 years ago
Use a different lab for her INR?
Eyzrbrn 2 years ago
You need to approve me as a friend because I can't message you. That was the same problem I was having the other day to give you more information why I said where to find it.
And I truly have it...all cited and written by doctors and the manufactures themselves. Look and the inserts in the strips. Read the fine print.
Eyzrbrn 2 years ago
I did review some of the articles....only one really addressed the accuracy problem...In my mind immediacy may outweigh the need for dead on accuracy...but we have other issues besides aps which mean we need to be at about 4 inr...thank you for your reply and for the aps website....I wish there was a better more concise exposition of the problem from the hematology folks.
646879 2 years ago
Several of them do, so you didn't read them all. We have articles for every finger stick machine on the market...home & professional. And information that comes direct from the manufacture. And there are several articles.
I will attempt to message you again.
Eyzrbrn 2 years ago
What is needed is a PDR style black box warning on the finger stick unit....to clearly delineate sources of error. After reading more, I believe that there are too many sources of error here.
646879 2 years ago 5
Exactly! But there are soo many people who do not believe what we are saying even with the cited information we provide. Drives me batty. They are just not safe for APSers to be using.
Eyzrbrn 2 years ago
i agree that sole reliance on finger stick home units is not wise....DR Ortels post on the apsfa website does however indicate a role when tempered by frequent crosschecks by hospital tests....as you do yourself. So i don't think that a blanket condemnation of home monitoring is needed, just know that you must be double checked. I am still not comfortable that even the hospital plasma based tests are that accurate after reading further.
646879 2 years ago
I haven't used a finger stick in machine in YEARS. After having a STROKE due to a bad reading, there is no way I would use one again. My INR was drawn and a Factor X was done to compare. The Factor X matched the lab draw. The machine was WRONG - GROSSLY WRONG. Good Luck and hope your wife doesn't have a major issues using these machines. The inconvenience of going to the lab every week is worth it to me. I get accruate INRs. My life is worth it.
Eyzrbrn 2 years ago
Also, nice that you removed your original posts stating that your wife's machine was off by .8 and you were subtracting that from the reading on the finger stick machine. That is ok, I have the emails stating what you and will share them if need be.
Eyzrbrn 2 years ago
by 646879: difference seems to be the same everytime we do it....i understand this is a complicated subject and not many docs do well with this condition....
Eyzrbrn 2 years ago
Since 646879 deleted his comments that showed how off his machines were I am putting them back there and quoting him. I am tired of people deleting their comments when they were corrected with the truth and the truth of how innacruate the machine IS being removed.
Eyzrbrn 2 years ago
According to one of Ortels articles on your website this method may be close enough for some patients...most of the time......so there are some inconsistencies in articles and on your website. I am uncomfortable with this myself as you know. For a large fraction of the patients this will not work and is not to be used exclusively as the only check.
646879 1 year ago
@646879 Because one doctor says it is "close enough" doesn't mean it is accurate. When the manufactures say it is inaccurate and your own wife's tests are inaccurate why do you sit here and argue the point? To prove you are right? You aren't right, the lab tests and the manufactures have already proved that point. Eventually, your math of subtracting X amount will catch up with your wife and cause a massive bleed, stroke or her death. Plain and simple. Done beating around the bush with ya.
Eyzrbrn 1 year ago
One, YouTube will not let you post links. But I will email you through YouTube with the links. But I did say they are on the APSFA links page.
Two, does your wife test positive for the Lupus Anticoagulant? 0.8 is a HUGE discrepency. That is the difference between holding or increasing the dose depending on which direction you are going.
Eyzrbrn 2 years ago
by 646879: i don't for one minute advocate that you do what we are doing , but if you truly have medical journal articles I would be most interested in seeing them...email me link or something....All her docs know this is what we are doing....so educate them/me....when comparing to ER blood draw we are always o.8 higher than them....where are your articles????
Eyzrbrn 2 years ago
Why does the APS foundatilon say that home monitoring of inr is not advised? My wife has found this to be most beneficial even though her unit is consistantly higher than her reading from the emergency room....so we subtract the systematic difference
646879 2 years ago
Nice so you subtract the difference and is the difference the same each and everytime? Do you do a huge mathamatical equasion to come up with your number. The manufactures say they are inaccurate, there are research papers saying there are inacurrate.
Finger stick INR machines are not accurate in APS patients. See the links page on the APSFA page. Read ALL of the disclaimers. Do you WANT your wife have a stroke. It is only time.
Eyzrbrn 2 years ago
Contd: The facts are that the finger stick machines are not accurate in APS patients. There are patients having strokes, other clotting events and dying because of the inaccuracies of those machines and yet this doctor still pushes them. Why?
Eyzrbrn 2 years ago
Contd: I have had reps who sell these machines come up to me at conferences telling me that will personally not sell these machines to APS patients because they have gotten to many calls from family members that the client died because of a false reading. Of course if their company knew they were saying this they would be canned immediately. Are the deaths just flukes, are the strokes just flukes? I had a stroke because of the inaccuracy of that damn little machine that is being pushed.
Eyzrbrn 2 years ago
Contd: I am not the only one having problems so why isn't that information being disclosed? It is disclosed by the manufactures, it is being disclosed by other researchers and other organizations.
So continue doing your math to figure out what you think the INR is. When she strokes out, has a massive DVT or dies, don't say the APSFA didn't warn you, don't say the manufacture didn't warn ya. Ignorance isn't necessarly bliss!
Eyzrbrn 2 years ago
And why was this question even asked here when this video does not even discuss finger stick machines?
Eyzrbrn 2 years ago
You answered your question within your comment. "even though her unit is consistantly higher than her reading from the emergency room....so we subtract the systematic difference" -- WHY should you need to subtract anything? And what if that day the machine is accurate and you still subtract?
The machines are inaccurate for APS patients. The companies have it listed in their inserts.
If you feel comfortable using a machine that is consistently WRONG, then have at it...it's your life.
hpeargirl 2 years ago 4
Yes, this person answered his own question. If these machines are so darn accurate you shouldn't have to add or subract anything. They should be right on. And who is to say that little machine is the one that is right especially when it clearly stated by the manufactures that the machines are inaccurate in APS patients. And right it is their life, when they stroke out, don't come crawling to me.
Eyzrbrn 2 years ago
I suggest you reada the APSFA's links page regarding the finger stick machines. Our sources are clearly cited. We truly hope you wife doesn't have a major incident due to the use of that finger stick machine. Does her doctor know you subtract the difference?
APSFA 2 years ago 4
by 646879: I did review some of the articles....only one really addressed the accuracy problem...In my mind immediacy may outweigh the need for dead on accuracy...but we have other issues besides aps which mean we need to be at about 4 inr...thank you for your reply and for the aps website....I wish there was a better more concise exposition of the problem from the hematology folks.
Eyzrbrn 2 years ago
by 646879: yes, 4 docs in Pensacola and Uab hematology also......THanks for the website it is good for those newly diagnosed.....
Eyzrbrn 2 years ago
Thanks a million for the video. I benefited from your video.
aprilcadena1 3 years ago 6
Second half of comments:
Doctors following the guideline and prescribing only Aspirin should be charged with murder when that patient has a massive stroke or organ failure from the disease. Then (and only then) would the doctors re-evaluate this antiquated 'guideline' (it is not even a rule, just a guide). The trouble is most are too stupid to think for themselves and have to follow others, like little lost sheep.
MixMasterEddieB 3 years ago 8
I'm going to add the first part of his comment so the comment is not misunderstood:
"Aspirin is the only way forward for a few patients who have a few symptoms, positive blood work and who have never had a clotting event. Once that patient has had a clotting event they have to be on Warfarin for life."
Eyzrbrn 3 years ago
Aspirin is the only way forward for a few patients who have a few symptoms, positive blood work and who have never had a clotting event. Once that patient has had a clotting event they have to be on Warfarin for life.
see next comment: ----
Those on Aspirin alone are just waiting to have a life-threatening clotting event before their doctors can follow the idiotic 'guideline' that a clotting event has to happen before they use prophylactic therapy of Warfarin.
MixMasterEddieB 3 years ago 10
"...they have to be on Warfarin for life."
Or Arixtra or Lovenox. :->
LieslMcQ 3 years ago 10
"using aspirin is the only thing you have to do". I am sorry but you are a fool for saying that. My mother died from APS and I was diagnosed with it 5 years ago after seizures and tia's. How dare someone say such an idiotic thing and make a something serious into something trivial.
CLBandfield 4 years ago 15
My guess the person who wrote that comment has NEVER had a clotting incident and grossly mis-informed.
Eyzrbrn 4 years ago
the only thing that u have to do is use aspirin =P
nirvaniac 4 years ago
The treatment of choice for patients with APS who have had a blood clot is warfarin. For women with APS & recurrent miscarriages who have not had a prior blood clot, the use of LMWH during the pregnancy significantly increases the likelihood of a successful outcome. Some individuals may have elevated antiphospholipid antibodies but have no clinical manifestations of the syndrome. These individuals are usually treated with aspirin.
APSFA 4 years ago 8
No way!! Using aspirin is not "the only thing you need to do". I was 26 years old and 20 weeks preggo when my heart attack happened.
This disease is more that just "take an aspirin"
Renae
Destiny162011 4 years ago 13
Totally agree with you Renae! If it was only so simple as a baby aspirin. Heck, even Coumadin and Lovenox still doesn't stop all the clots.
Eyzrbrn 4 years ago
I have this disease. I was diagnosed when I was 22 but had it all of my life. I'm 37 male. I needed major operation on my lungs because they were filled with clots at 22 years of age.
NJNetFan 4 years ago 11
Great job. Gives some good basic info with simple facts. Thanks
2270bishop 4 years ago 11