Question about INR: Hello new friends... - Hughes Syndrome -...

Hughes Syndrome - APS Support
9,495 members9,588 posts

Question about INR

Esolt
Esolt

Hello new friends, I am trying to understand my condition and have been reading so many of your posts. I have currently been told to take aspirin daily. I have lost four babies, but have not had any dvts, stroke, or other clotting issues that I know of. Are there tests to determine if I have had unrecognized issues like this? And What I was really wondering... I do not know my INR. Is this something that all of us need to be knowledgeable about or only after clot or stroke? And doesn't that seem a little late? Does your regular doc do this? My other main symptoms is almost endless headaches. Thanks for your input!

12 Replies
oldestnewest

You need to know your INR if you are taking warfarin/ coumadin and that will be set by the doctor who prescribes it. Aspirin is an antiplatelet not an anti coagulant. An antiplatelet makes your blood less” sticky”. An anticoagulant’s job is to stop coagulation/clotting. Sounds the same but is very different. It is best to have your doctor explain why you are on aspirin versus warfarin. This way he can answer all of your questions and clarify up any confusion you may have as to why you’re prescribed aspirin, best of wishes, Cindy.

Esolt
Esolt in reply to Wittycjt

Thank you, and everyone who replied. I am on a steep learning curve and trying understand even what I need to ask about during my next appointment, so thank you all for helping me to understand everything.

Wittycjt
Wittycjt in reply to Esolt

Where are you from and who is your specialist?

Esolt
Esolt in reply to Wittycjt

Virginia, and trying to get into a specialist at UVA - hasn't happened yet.

HollyHeski
HollyHeskiAdministrator

Hi, Ive read your previous post as well, have you talked your coldness and headaches through with your doctor.

I see you were going to try and get your thryroid, B12 etc checked?

It may be aspirin is not enough for you, this is an anti-platelet, you may need heperin or warfarin, which is an anticoagurant, to thin your blood more. Only once on warfarin, do we check our INR, people with APS/Hughes, have a target between 2-3 INR, when they have not had an arterial clot.

It may be worth asking your doctor to go on a trial of heparin or warfarin, to see if your symptoms improve?

It is also important to see a specialist on this, as views can differ.

Esolt
Esolt in reply to HollyHeski

thank you, yes, I have printed the thyroid list from MaryF and now just need to figure out how to pursue it. thanks for your input as well.

Hi Esolt,

I also read quickly you other post just now.

As Wittycjt said you ONLY think of INR when taking Warfarin. We all have an INR around 1.0 when not anticoagulated.

The difficulty is that we need a Specialist of Autoimmun illnesses who knows people like us with perhaps HS/APS, Lupus, Sjögrens and Thyroidea-issues who had helped these people as he/she knows the symptoms and how the different illnesses work together.

They go hand in hand very often like "cousins" and that is why we need this SPECIALIST.

I am primary APS (no other autoimmun illnesses than HS/APS so far), but still I have a positive ANA so there can be more perhaps .......

I wonder also if the Aspirin helped as to your headache? Do you have other neurological symptoms and still Aspirin does not help?

I think you should ask for a trial of Heparin as HollyHesky suggested to see if the symptoms improve. I started with Aspirinn and it helped for a while but later I got worse and I had to take Warfarin. I am triplepositive (all 3 antibodies in high titres since 2002) and need Warfarin today with an INR of 4.0.

I suggest you read "Sticky Blood Explained" by Kay Thackray. Very good book to understand our illness. She has got APS herself. I have bought it in pocket in Stockholm.

Best wishes from Kerstin in Stockholm

lupus-support1
lupus-support1Administrator in reply to Lure2

There are many "healthy" people with a positive ANA which is why this test alone is insufficient to make a diagnosis of an autoimmune condition. To complicate matters, "sero-negative" patients exist who have autoimmune diseases.

Hence, it is the symptoms that matter for a clinical diagnosis.

Lure2
Lure2 in reply to lupus-support1

Hi Ros,

I have a lot of symptoms but also know how difficult to get a real diagnose.

Thanks a lot!

Kerstin

Esolt
Esolt in reply to Lure2

Thank you for answering. Aspirin has not proven to help my headaches much. I am not sure what other "neurological symptoms" you are asking about, but would like to know. I am trying to clarify as much information as I can, so that I can understand what I need to ask my doctor about. I will look for the book. Thanks!

Esolt
Esolt in reply to Lure2

Thank you for answering. Aspirin has not proven to help my headaches much. I am not sure what other "neurological symptoms" you are asking about, but would like to know. I am trying to clarify as much information as I can, so that I can understand what I need to ask my doctor about. I will look for the book. Thanks!

lupus-support1
lupus-support1Administrator

Welcome!

If you are already taking aspirin AND you are still having headaches, this suggests you need to see a specialist in APS/Hughes Syndrome.

Anyone who has had a miscarriage (and I am so very sorry to read, you have suffered 4 miscarriages), needs to be assessed by a specialist.

You should not have to wait for you to have an event before seeing a specialist. Please get a referral from your GP as soon as possible.

With good wishes,

Ros

You may also like...