Sticky Blood-Hughes Syndrome Support
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My consultant has taken me off warfarin.

All my blood tests have been negative and he cannot understand why i was put on them. I am being tested every 4 weeks so he can keep an eye on me. He has also prescribed me Amitriptyline to help with headaches. I am quite concerned as they are antidepressants and I don't want to go back to using them as I had them many years ago for postnatal depression and found them hard to get off. Does anyone use these for headaches? What R side effects and do they work? Im also on vitamin D supplements :-) xx

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Presumably this particular consultant understands your symptoms and the nature of Seronegative Hughes Syndrome/APS????!!! if you previously had a diagnosis and were put on Warfarin, I do not understand why they have taken you off this, and of course the responsibility will lie with them to manager you care and your symptoms, keep a diary and go and seek medical help should you feel very unwell. MaryF

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The consultant works with Prof Hughes I got his name from the website. All my tests have been negative since 2002. It was a haemotologist at a different hospital that put me on warfarin without doing any tests. I will definatly keep a diary. Thanks for reply xx

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Yes a diary is the way forward, did you have positive tests prior to 2002? Make sure your medical history to date is written out in bullet point somewhere in the diary, and yes write down anything of significance, hope you feel better soon. MaryF

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I was diagnosed in 1997 after a miscarriage at 22 weeks at a different hospital. Not sure if I can get my old notes. Only time I've had problems was in pregnancy. Eldest son was born at 29 weeks using asprin and youngest son was full term on asprin and fragmin. Didn't take anything from 2003 - 2014 when started warfarin. Xx

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Hi

Where are you from and do you have an APS consultant looking after you?

I am also on Amitriptyline for migraine but I only take 20mg; the starting dose for use as an antidepressant is, I understand, 75mg.

Dave

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Im from surrey and yes I have a consultant im seeing every month at the moment.I've been prescribed 10mg of amitryptyline. Does it help you? My doc said there are a few things to try but started these first xx

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As Mary said, it is possible to have seronegative APS, although some doctors do not believe this. See this link:

hughes-syndrome.org/about-h...

I was on Warfarin for seven years and my migraines stopped completely. Then, for no obvious reason they returned and my neurologist suggested that I try Amitriptyline 20mg. The migraines stopped as soon as I started this drug and have not returned, so far, after five years.

I am also now on Frgamin, instead of Warfarin, but I have not been brave enough to try stopping the Amitriptyline to see what happens.

Dave

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Hi there. I had a stroke about 12 years ago aged 42 (no risk factors) and had one raise cardiolipin blood result. Since then I have been zero-negative. I wanted to go on an alternative anticoagulant used for AF but was refused as it is not licensed for APS. My rheumatologist has written to my GP suggesting I could come off warfarin as my INR is wildly unstable. I am very reluctant to replace warfarin with aspirin. Anyone had similar advice? I am plaque nil 400mgs daily (reduced to 200mg in Nov and pains returned in hands and feet).

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i have been tested positive twice in france, have had no clots or stroke, since returning to the uk in 2013 i have tested negative,i take 75mg aspirin, 400mgs plaquenil daily and amiltriptyline....between 10mg and 30mg daily....does help me sleep....although i do have bad joint pains, doctor is now thinking i may have rheumatoid arthritis as well as hughs and sjogren's.....also negative bloods for sjogren's but have had lip biopsy....fortunately my rheumy understands seronegative!

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Hi

I may be wrong, but I was under the impression that it is possible to be Positive while pregnant, but not afterwards, so anticoagulants are only needed during pregnancy.

Good luck with it

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