Aps

[Grandad-shark]

Hi I am joining this forum to help my wife who has aps and has been struggling with high inr levels. She has joined this group (nanny-shark)

[KellyInTexas Administrator]

Hello Grandad Shark.

It’s very nice of you to help.

Of course you know we are not doctors, but are happy to help you navigate getting the help you need to help you wife .

Where are you guys located?

I am going on the premise you are in close contact with your wife’s APS Specialist.

And while I’m at it, this is for you:

ghic.world/

Also, when stepping back for a moment, and doing a general system’s check just to make sure basics are being looked at, please check under pinned post section of this forum “ vitamins and minerals”

Make sure vitamin B’s D-3 are ok. Check folate levels. Check iron. Run a comprehensive, full extended panel thyroid test.

That’s the best start I can give you, other than telling you that any change / deterioration in your wife’s condition must be urgently seen to by APS Specialist, which I’m sure you are already doing.

Once she is seen to rule out infection, etc, come back on. We can help with education in helping with stability in vitamin k / warfarin diet if that the best solution that’s is determined by her Hematologist.

[HollyHeski Administrator]

Welcome to you both

[Lure2]

Hi to you and your wife and most wellcome to this friendly site where we try to help eachother with our own experience and knowledge! I live in Stockholm and have been on Warfarin for many years now and selftest also.

I wonder if your wife has been diagnosed by symptoms or by antibodies. If by antibodies does she have Lupus Anticoagulant positive? If LA is positive it can be difficult to handle the Warfarin-treatment as the INR can change a lot from day to day and be very erratic.

How long time has she been on Warfarin and does she selftest? What therapeutic level has the Specialist put her on? Important to have answers on these questions to be able to help your wife with a too high INR.

[Grandad-shark in reply to Lure2]

My wife was constantly having an inr of around 8,they have now taken her off warfarin and now we are waiting for the doctor to tell us the next step. She has had a tia and been rushed to hospital with severe bleeding. She suffers constant fatigue

[Lure2 in reply to Grandad-shark]

I do hope she has got a "Specialist of autoimmun illnesses" who is used to and works with patients with Antiphospholipidsyndrome. Most important as so very few Doctors are knowledable of APS (short for our illness)

Who is in charge of your wifes anticoagulation? Where is your wife at present? What hospital?

We have learnt here that we must never ever stop Warfarin once we have started it, without another anticoagulation-drug instead. After a TIA or stroke we usually need an INR of 3.5 - 4.0.

[Holley]

Welcome!

Many of us on here were (are) hard to regulate w/ warfarin. It's important to keep your wife's diet as consistent as possible day to day. I was on warfarin for years. After having two strokes (one caused by a clot, the other by a bleed) in the past year, I'm now doing twice daily Lovenox injections. Some of us on here have a hematologist who monitors our APS or a rheumatologist. Some have both. APS can affect other organs in the body (heart, kidneys, etc). Does your wife's family have any history of autoimmune illnesses? Many on here have family members with autoimmune diseases. Where are you located?

This is a great forum.

Your names make me think of the baby shark song ("baby shark, do do do...").

[Grandad-shark in reply to Holley]

Hi Holley our names come from our grandchildren. Unfortunately my wife was adopted so we have no family history. She has been taken off warfarin and awaiting mor n depth blood test as her inr is always high even without warfarin.

[Wittycjt in reply to Grandad-shark]

Interesting Are you sure she has APS?