Young people and unstable INR

Hi everyone!

I'm new to this site, I'm 21 but was first diagnosed in 2007 when I was 16 with multiple DVTs and a PE. I have yet to find anyone around my age with Hughes syndrome yet. If there is anyone out there I was wondering how they have found coping with Hughes whilst attending university or just generally having a relatively normal life.

Another thing I've found; despite being on warfarin for just over five years now it as never been stable for more than a month. Has anyone else had issues battling to get it to a normal level.

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8 Replies

  • Hi Lemroc and a very warm welcome to you. I'm so glad you have found us and we will do the best to support you.

    I'm so sorry you have got this horrible condition and had to put up with it from such an early age. At the same time I'm also glad that your Doctor/s were on the ball and dx it early so at least you knew what you were dealing with.

    Unfortunately unstable INR can be something that people suffer with and it can be a real issue. Some have to give up on warfarin and move over to heparin if it really becomes an issue. Also some have to add anti platelets in with the warfarin which also sometimes helps.

    I don't know where you are situated but if in the UK I would advise that you are under one of the APS specialists listed on the HFS website as they have been recommended by other APS people and they will have really good knowledge about treating the condition. Everyone is different so it's important that you find someone who is prepared to try different things for you.

    Good luck and I'm sure some of our younger members will be along soon. Xx

  • I was very fortunate that my GP had recently read a medical journal which had an article about the condition, so it was mostly luck and a decent GP. It took a further three years to finally diagnose my mother with APS as well.

    I have tried the heparin (Clexane) option which I found was far worse than warfarin, as I really hated injecting myself. I also had a quite bad swelling and bruising at the injection sites. I have yet to try anti-platelets.

    I'm was situated in Surrey but I'm currently in the South West for university. I currently under Dr Breen and the team at Guys and St Thomas'. I have to go there every six months, which would be a hassle but it works out around the same time as my holidays from uni.

    I'm currently looking into a self testing machine as it would save the weekly trips to the doctor as its really annoying.

  • Dr Breen and her team are great - my husband and daughter are both treated at St Thomas'. Try asking the Thomas' people about other drugs instead of warferin - I believe there are some on the way.

  • Yes, I agree that Prof Beverley Hunt and Dr Karen Breen's team are the best in London at the moment, plus they have that great new space at Guy's :)

    I run the HSF charity and can reassure you that, yes, there are other young people with APS who lead normal and fulfilling lives. I don't think you'll find many on this type of community as they're probably out there being busy - you might have more luck posting on our Facebook page:

    Unstable INRs are a feature of Hughes unfortunately. Our charity runs a small loan scheme of Coaguchek XS, particularly for people who are LA positive. Please email me directly at the charity so we can discuss this further if you like:

  • Hey I'm 22 and like you have been on warfarin a long time. It's hard to cope sometimes with other people our age not understanding. The 'not being able to drink' thing is REALLY hard at times but we just have to get on with it.

    I get how you feel. You ever need to talk just message me

    MJ xx

  • hi im 28 and was diagnosed at 21 n live fairly normal life with my 2 miracle bby girls xx life has its ups n dwns bt jst get on with it.... feel free 2 message me....xx

  • also I had unstable inrs 4 many years and now take rivaroxabin as fragmin wasn't 4 me either.....ive had 2 major p/e`s n several clots all over n been in intensive care twice and still here.....; xxx

  • Hiya,

    I am on the younger end of the age scale I guess but like, many I struggle with the inr side of things. Heperin is hard to comply with in ejecting ones self is hard going and the bruising is horrid. You can always leave a message in my inbox here if you fancy a chat.

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