What has your target INR been set at? - Hughes Syndrome -...

Hughes Syndrome - APS Support

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What has your target INR been set at?

Bonnie39
Bonnie39

MIne has been set at 2 - 3 as decided by a thrombotologist (not APS specialist as far as I can find out). I noticed many people have a higher target so was wondering what the right one is for people with APS?

15 Replies
oldestnewest

Hi Bonnie

Where are you from and who is managing your APS?

Many APS patients need an INR of anywhere between 3.6 & 4.5 to feel reasonably well; it varies between people.

Dave

Thanks Dave. I'm in London. Local hospital set the target but have my second visit to St Ts Tuesday for SLE primarily so was wondering if I should query it therr or with the thrombotologist. Dr at St Ts queried wisdom of warfarin and said it was an outdated treatment of APS but gave no detail of alternatives. I have first followup with thrombotologist the week after next so could raise the question with her.

I dont want a higher INR than is necessary for the APS but want to know I'm aiming for the right thing!

Have had some weird bleeding for almost a month now and GP was wondering if it was because I am on warfarin. Investigations into that start tomorrow.

That sounds sensible. I will ask about this on Tuesday and next week. Still having bad headaches, Reynauds and fatigue.

Bonnie, Make sure to let them know you are still having bad headaches--in APS they should improve (or better yet completely resolve) with the right treatment. My Raynaud's also improved.

Bonnie, you can also see an old poll on here asking that very question and you can see the answers which are very interesting in that most people need a higher INR than what yours has been set at.

Thanks. I will take a look.

My inr is set at 2.5-3.5 range

Mine is set at 2.5-3.5. But I also have a mechanical mitral valve on top of APS.

Hi mine is set at 4.5/ 5.0 as i have had so many clots but very difficult to maintain i take anything from 40mg to 50mg warfarin daily and just never stays were it should . I have a portacath in my chest as its so hard to get blood from mw twice a week.

Keep well

mine is at 2.5-3.5 and I feel much better when it is around 3.3- 3.4

Mine was set at 2-3. Initially it took over a year to get to 1.8. Now, this year, after many attempts, visits to gp, my request taken into account at last, its been risen to 2.75. Last check I was 3.3 and feeling reasonably ok, but clinic have changed my dosage of warfarin to lower. i'm just floundering.

if I say on slip I don't feel right, they say go to gp. I go to gp sometimes, they say they can't do anything because they are led by haematology.. told i'm imagining because inr has nothing to do with symptoms of brain fog, confusion etc, and they can't do anything

I had my strokes in 2010, diagnosed with hughes and stress as the cause. one appointment with haematology, 2 with stroke, no follow up.

I go to inr when called, no further input.

Lure2
Lure2 in reply to greenlady

Hi greenlady!

I am so glad that you wrote here again after 4 years. Also glad that you live in Great Britain as it is easier to get a Specialist in England than in the US.

You need a Specialist to feel good. Have you tested positive for any of the three antibodies they test for APS? You can also be diagnosed by symtoms from a Doctor who is specialized in autoimmun illnesses like SLE, Sjögrens and Hughes Syndrome (APS or Sticky Blood).

I am now on Warfarin with an INR of 3.5 - 4.0 and selftest at home. The INR can change a lot in a couple of days and it is important to keep a constant INR to miss all the symptoms. Did you hear Prof Hughes talking here the other day about that most of us need an INR between 3.5 - 4-0 to be ok.

I suggest that you put a new question on our site with you symptoms and you will have answers how you should get on. We know here that you do not imagine these things!

You could also read "Sticky Blood Explained" by Kay Thackray. She has APS and she writes about the different symptoms. Many members here (me too), like that book very much.

Best wishes from Kerstin in Stockholm

Just recently diagnosed and was set a level between 2-3 my last reading was 2.5 and I feel much better than before I started taking Warfarin.

Dean in Leicester.

Lure2
Lure2 in reply to DeanJ

Hi Deanj,

So glad that you are feeling better!

If i were you I would listen to what prof Hughes is saying about INR.

I saw that APsnotFab suggested that you should be on a higher INR than 2.5 on an answer to you 2 months ago.

To begin with (I also had 2.5 the first months) you feel much better but in the long rund it can be dangerous to be under an INR of 3.0. Today I am on an INR of 3.5 - 4.0 and feel best around 4.0. I have been on Warfarin for 5 years and selftest.

Merry Christmas from Kerstin in Stockholm

DeanJ
DeanJ in reply to Lure2

Thanks Kerstin ,

Pre warfarin I was 0.9 now at 2.5 I feel much better, I am a firm believer in knowing my own body and how I feel , believe me, that is much much better :)

My specialist is Dr Gooding and he's on the approved list and he's happy with my early progress and levels for now , that will do for me.

Merry Christmas to you too.

Dean.

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