INR when taking Fragminshot- - Hughes Syndrome A...

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INR when taking Fragminshot-

Lure2 profile image
14 Replies

My Hematologist at the hospital (she knows me since several years) wants me at an INR of 2.5 - 3.5. I am selftesting and only go to the lab every 8 weeks. Most of the time I am on an INR of 3.5. I have been much higher with no bleeding but take it down with brusselsprouts in 24 hours if it is too high.

If my INR goes too low I have got Fragmin 5000 IE in a shot. I have never used it. She has written to the hospital or too me that when I go under an INR of 1.8 I have to take the shot of Fragmin. I Think this is too low. I have heard that some of you take a shot if the warfarin goes under 3.0 or 2.5 in INR.

Should appreciate your opinions about this. I am afraid to be in hospital and they do not understand. As long as I can speak and take care of myself it is ok but I have pulmonary hypertension and leaking hearwalves and who knows......

Kerstin

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Lure2
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14 Replies
Manofmendip profile image
Manofmendip

Hello Kerstin

I used to do a 5,000IU Fragmin shot when my INR dropped below 3.3.

As you know, I'm now off Warfarin and on 15,000IU Fragmin per day.

Dave x

Lure2 profile image
Lure2 in reply toManofmendip

Hi Dave, I hoped you would answer! Do you agree with me that an INR of 1.8 is exstremely low.

Did your doctor (prof Hughes) suggest that INR? It was when you were still on warfarin?

I am going to talk with my Hematologist. She is so afraid of bleeding.

Thank you for answering! Have a nice weekend. Tomorrow we are going to vote for the parliament in Sweden. We do it every 4 year.

Kerstin

Manofmendip profile image
Manofmendip in reply toLure2

Hi Kerstin

Prof Hughes told me to inject 5,000IU of Fragmin if my INR dropped below 3.3, when I was on Warfarin.

Best wishes.

Dave x

tim47 profile image
tim47

I have Fragmin when I drop below 3.0. I inject 18,000 - but I am a fair bit heavier than slim Dave ;-)

Before I had the hole in my heart repaired, I had multiple TIAs and three were on one day when my INR was 3.3. The stroke doctor confirmed the number of TIAs in a day (I'd love to know how), I had self-tested and knew that I was 3.3. I seem to recall a conversation along the lines that and INR of 3.0 was "dangerous", below 2.5 was "bloody dangerous".

I hasten to add that the numbers are not to be taken as generalisations for all but based on individual's past history.

Lure2 profile image
Lure2 in reply totim47

Thank you Tim! I think I remember that you were on warfarin with an INR between 3.5 - 3.8 It was anyway very narrow. I also think I remember that you are Lupus Anticoagulant like me. An INR over 4.0 could be "bloody dangerous".

I think we have different "sticky" blood. That is why some of us need a higher INR. The brain and the heart probably also need a higher INR.

Best wishes from Kerstin

Manofmendip profile image
Manofmendip in reply totim47

Thank you for your kind comment Tim :)

It must be my round for a beer after our next APS South West meeting.

Dave

MaryF profile image
MaryFAdministrator

Best of luck, I have only ever used Fragmin during pregnancy so don't have personal experience of this at the present time, but have read many similar answers to Dave. MaryF

Lure2 profile image
Lure2 in reply toMaryF

Thank you Mary. I do not intend to start Fragmin. It is just when the INR goes too low I have to take a Fragminshot. My hematologist has written on the "shot" that I shall take it when my INR goes below 1.8. That is too low. If my Hamatologist insists I have to change doctor or drug.

Kerstin

Manofmendip profile image
Manofmendip in reply toLure2

I agree Kerstin

Tell them that below around 3.3 is a safer level to start to inject.

Dave

Lure2 profile image
Lure2 in reply toManofmendip

Hi Dave,

I am going to say 3.0. I want a higher therapeutic range than 2.5 - 3.5. I want 3.2 - 3.8. in INR. I selftest and I try to be at 3.5. Lets see how it goes ..........

Thank you from Kerstin

Manofmendip profile image
Manofmendip in reply toLure2

Good idea Kerstin, good luck. Dave x

Lure2 profile image
Lure2

Thank you APsnotFab,

I know that she is afraid for me to bleed. But I have not told her before that I want a higher INR. I have known this doctor since 2006 but I also have a Rheumatologist that knows APS much better I guess. I am going to insist and I think she may do as I say. I know now what to tell her and also show her in case I need it. I have read and learnt so much on this site thanks to you all.

If she still wants me on 1.8 before taking Fragminshots I must do something else.

Kerstin

GinaD profile image
GinaD

I have posted this comment before. I suppose for me it never gets old:

Health professionals shouldn't compare apples to oranges. Patients with Hugh INRs who do NOT have APS have much higher bleeding risks. They have a sticky spot in their blood plumbing system. We have sticky blood!

I'll be thinking of you and I hope you get the range numbers sorted out!

Lure2 profile image
Lure2 in reply toGinaD

Hi Gina and thank you so much for your comment and wishes for better INR-levels.

Kerstin

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