Hi I'm Carol 72 years, I was diagnosed with APS in 2002 it was a relief to get a reason for all my ills

[CarrollC]

Long term effects of taking Warfarin

[KellyInTexas Administrator]

Hello CarrollC,

Very glad you have found our group, and I hope that we can be if support to you, or just a caring / friendly and safe place to land if needed.

Hope you can be the same for us- as we are all unique in our journey in one way or another, although the overarching story / stories that is stitched together with threads of the same spool 🧵 (s), and there fore we seem to be a “tribe that vibe” and automatically recognise and “know” one another, although we represent many cultures and countries here.

I hope you are well, welcome, and let us know how we can be of help.

[CarrollC in reply to KellyInTexas]

Thanks kellyln it just nice to be in touch with people who understand what we have to go through

[Lure2]

Hi CarrollC,

I am 78 and i am from Sweden. Had a lot of TIAs och finally got my Warfarin in 2012. I have a Rheumatologist and a Hematologist at the big hospital here in Stockholm. I am triple positive with high titres all the time since my diagnose in 2002. I have had a lot of microembolies and TIAs with neurological symptoms and also now Pulmonal hypertension and leaking heartvalves etc. Warfarin has been my lifesaver. I try to keep an INR of around 4.0 to feel ok.

I wonder how you have lived with Warfarin and what therapeutic level your Specialist has used for you? I guess you have now a Specialist which is very important as this illness is, as you know, so very unique and so very few Doctors understand our sticky blood. I selftest since several years in the finger almost every day and do blood tests in the vein at the Hospital lab here perhaps every twice or third month to see if the INR is about the same number in the vein as with the machine I use for the finger.

Hope you stay with us here. Hope to hear from you.

[GinaD]

Congratulations on achieving a diagnosis! I am 67 and survived numerous mini strokes before finally getting diagnosis and treatment with warfarin. Despite its bad reputation, warfarin has been my life saver! I have been on warfarin for over 20 years and have been out of my INR range only a few times. I found out by accident in 2004 that I have gluten sensitivity and have been gluten free ever since. Since going gluten free, all the once-high APS blood tests are now normal -- numbers one hematologist calles " boring." Some current hematologists now question if my APS diagnosis was correct. The original hematologist retired long ago, But I know how scary those mini strokes were, so I refuse to stop warfarin -though I do remain symptom free with an INR low as 1.7. The only possible long term side effect MAY be loss of bone density. I went fom 5'10" to 5'8". I had a dexascan yesterday so we'll see how strong my bones are after absorbing less vitamin K.

[MaryF Administrator]

Hello and welcome. This is a warm and friendly group where a lot of us have stories to tell regarding diagnosis, we always to endeavour to help where possible, we hope you find it useful and enjoyable. MaryF

[Dot69]

Good to know you've got a diagnosis, helps enormously My INR needs to be between 3.5 - 4 I go for blood test monthly but if my INR is too low or high they'll want to see me after 2 weeks.

We are very special with APS so lots of explaining to people who don't understand or not heard of it

I've been on warfarin for over 8 years, I'm nearly 76 and still here and keep active