INR and APS

[jenss]

Hi, I am wondering: can one have APS with INR of 1.0? I assume there are other conditions that can cause an INR greater than 1.0, so increased INR does not lead to diagnosis of APS right? Also, why are target INRs for APS patients not 1.0 (as INR of normal blood is 1.0)? Thanks.

[Lure2]

Hi, Are you diagnosed APS? Who is treating your illness?

Of course you can have. After 2 days with warfarin I had 1.4. People with APS have too thick blood. Warfarin makes it thinner.Some of us with APS have more sludgy (more thick) blood than others with APS.

If we should have an INR of 1.0 (that most of us have without warfarin) we should have too thick blood and a risk of stroke and TIA and several symptoms. This illness is the same as too thick blood. Warfarin makes it thinner. We that have APS must have a higher INR than "normal" people who have a stroke. I feel best at an INR of 3.5.

Hope I could explain in my "Swedish thinking"

Kerstin in Stockholm

[jenss in reply to Lure2]

Hi Kerstin, thank you for your reply. I have not been diagnosed as yet, seeing specialist on Thurs after blood test and MRI scan. I am just trying to understand a bit better before I go on Thurs. Sorry I am still not understanding. I thought on Hughes Foundation website it says normal blood INR is about 1.0. I understand that APS suffer's blood clots faster/more and therefore blood thinners are given (Warfarin). The INR of APS is different to 1.0? Is this correct or is it 1.0 as well (without Warfarin)? I thought is higher than 1.0 and therefore I wonder why the aim is then not to reduce until 1.0 is reached (which would then be like blood clotting in normal blood). Sorry, but I am not clear on this could you please try to explain again. Thank you.xx

[Manofmendip in reply to jenss]

Hi Jenns

INR levels have no bearing on whether or not you have APS; that is decided by a combination of symptoms and other blood tests, have a look on this site: hughes-syndrome.org/

INR is a measure of the clotting time of a person's blood when taking Warfarin. Without Warfarin, most people have an INR of around 1.0, whether they have APS or not.

When you take Warfarin, your INR will increase from 1.0, whether you have APS or not; Warfarin is given to people for many conditions not just APS. For some conditions patients need an INR of around 2.5, whereas APS patients often need an INR between 3.5 to 4.0 to feel better. The dose of Warfarin to achieve a target INR varies greatly between people and also is affected by how much Vitamin K is in a persons diet.

Professor Hughes has suggested that INR can be looked at in this way: 1.0 (full cream milk); 2.0 (semi-skimmed milk); and 3.0+ (skimmed milk).

I hope that this is helpful.

Let us know how you get on and if you have a diagnosis of APS. Where are you from?

Best wishes and good luck.

Dave

[jenss in reply to Manofmendip]

Hi Dave, thanks I think I understand now. I will let you know what the haematologist says on Thurs. I am from Melbourne, Australia. I have read on older post that there is a specialist Dr Tim Geoffreys(?) at the Austin Hospital here who has apparently worked with Dr Hughes. I will see him if I am not happy with what haematologist says. Cheers, xx

[Manofmendip in reply to jenss]

Great Jenns.

Dave

[Lure2 in reply to jenss]

Hi, That was a perfect answer! Glad that Dave could answer because he has been on warfarin like me.

I am sure you get the help you need when I read the above.

Please let us know how it goes.

Kerstin

[MaryF Administrator in reply to jenss]

Hi, I can see you have had some great advice so far, and yes to your idea of Dr Tim Godfrey, I enclose a previous post! healthunlocked.com/hughes-s...

Do also familiarize yourself with the entire HSF charity website. Also there are books for sale written by both patients and also Professor Hughes, I read them all and then handed them on to various people involved in the medical care of both myself and my children. MaryF

MaryF

[Lure2 in reply to jenss]

I have APS. When I started warfarin I had 1.0. Day 2 I had 1.4 and day 6 I had 2.0 in PK/INR

With warfarin you prolong the ability of the blood to coagulate.

I am sorry but I can not explain better. Hope you can have an answer from a better source

It is very difficult to understand especially when you think of the warfarintablets and the K-vitamins (anti-dots). In practise I mean.

I wish you good luck when meeting your specialist on Thursday! If you are diagnoses APS try to find an APS-doctor. That is very important as so few doctors understand APS.

Kerstin here in Stockholm

[Hidden]

I was once told by the local hospital that there was no way any doctor would put me on Warfarin with my INR.... yet I have been on it now for 15 months! My preferred range is 3.0-4.0 and I genuinely feel better for it so I would say the answer is yes. Great explanation from Dave, the Professor told me the same. Good luck with getting a confirmed diagnosis, that's half the battle!

[jenss]

Hello Kerstin, Mary, Dave, Lissylou et al, thank you for your advice I hope I will have a good review on Thursday. Thanks Mary for the older post I would have needed to search again for the correct details of the Dr but you've done it for me. You are all very helpful and caring people. Take care. Cheers, xx

[GinaD]

Hi. I remember the fear which came with my diagnosis. I was going to have to live the rest of my life with an INR that indicated my blood was several times thinner then normal? Suddenly, every car ride was a potential accident and a bleed out. Every walk. Every stubbed toe.

But then as I researched and asked questions I realized that comparing the INR of sticky blood patients with those who have normal blood is not helpful.

For one thing; an INR is run on drawn blood which is removed from most of our insane immune systems. When that vial is spun in the lab's centrifuge there is no thymus gland or lymphatic system having a temper tantrum over a mis perceived threat. Within that spinning vial there are no outside bodily forces mobilizing the cytokines and ordering the antibodies to attack every enemy in sight, causing the platelets to clump and clot even more.

For another; most patients on warfarin take it because they have a sticky spot in their circulatory system. We have sticky blood. So comparing the risk of a bleed at a given INR for a patient on warfarin for a new heart valve is in no way similar to the risk of someone at the same INR to treat APS. Which is not to say that warfarin does not carry risks. But the risks are not as great as I first calculated when I was first diagnosed.

I started warfarin and my migraines and mini strokes stopped. I learned that warfarin was actually my body's new pharmacological Best friend.

[Lure2]

Hi Gina,

I totally agree with you. I have a special and I hope mutual friendship with this drug.

Kerstin

[ledlegs]

Hi an INR of 1.0 is normal blood that everyone without APS would have. INR of 2.0 is twice as thin, 3.0 three times thinner etc. APS sufferers have a higher INR because they take blood thinners such as Warfarin to help with symptoms of APS. APS itself does not increase the INR, a person would need to be on blood thinners to increase it. I suffered 3 DVT's so need my blood thinner to prevent it clotting again.

[Lure2 in reply to ledlegs]

Yes, that is the key to feel better. Some of us have thicker blood than others and need a perhaps higher INR also.

Best wishes,

Kerstin in Stockholm