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APS/Hughes Syndrome and medication.

(6 Posts)
FatPat Sat 09-Jul-11 22:35:48

I was diagnosed with Hughes Syndrome after several recurrent miscarriages between 10-12 weeks and the only time I have taken medication has been during (failed) pregnancies.
I have lots of symptoms which seem to fit the APS diagnosis but do not see any specialists or take medication.
I am not currently ttc or thinking about it in the future but am worried about the long term implications of the APS diagnosis, blood clots, tia's etc.
If there is anyone who also has APS who would be willing to talk about how they are/or not treated I would be very grateful.
I am planning to go and speak to my GP at some point and would like to be aware of any facts/risks.
With Thanks

Aftereightsaremine Sun 10-Jul-11 07:09:36

I was diagnosed with APS about 8 years ago following a couple of miscarriages. I take aspirin & plavix daily. Where do you live? I was referred to the Lupus Unit at St Thomas' hospital who will carry out all necessary tests & monitor you - though you probably won't get to see the same doctor every time. If you have private health care you may be able to be referred to the Lupus Centre at London Bridge Hospital which was set up by Professor Hughes.
Good luck.

FatPat Sun 10-Jul-11 20:18:24

Thanks for your reply aftereightsaremine .
I am in the North West. Did your GP refer you?
Anyone else with any advise would be really appreciated.

Aftereightsaremine Sun 10-Jul-11 21:01:26

GP referred me - St Thomas' have people visit from all over the country if that helps you. The good thing is once you have positive diagnosis you will receive very good monitoring. (I get seen annually by St thomas' & in between I visit London bridge hospital. I have since been diagnosed with RA & sjogrens which may not have been flagged up immediately otherwise.

FatPat Sun 10-Jul-11 21:51:09

Thanks again smile
I was diagnosed with APS & FactorV Leiden about 12 months ago. GP knew about the medication I was taking when I waspregnant.
I just wanted to know if it was normal proceedure to refer to a specialist once the diagnosis wasgiven.
It has only been in the last few days that I have done any research into it and it's been an eye opener in termsof the symptoms I have!

FatPat Mon 11-Jul-11 16:50:25

just bumping to see if anyone else has any advice
Thank you

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