Still many questions as newly diagnosed. Trying to get my head around it. Could I have had this for years and not known?

Hi all, I was diagnosed after a late term pregnancy loss. I'm now pregnant again and being treated by an excellent and clued up obstetrician. However still waiting to see a rheumatologist. Before my pregnancy I had no real symptoms of Hughes. I tested positive for LA not ACL. I had a funny 'episode' in 2002 aged 20 when I had about 3 months of feeling very weak/tired/fatigued and dizzy all the time. Really quite poorly for someone who was usually well. Then it would come and go and then disappeared. I went to the doctors at the time who did many blood tests and an ECG all of which were fine and he said it was unexplained or a virus thing. Could this have been the start of this condition? Can it go into like a remission? My obstetrician thinks I may only have Hughes flare in pregnancy because of the 'mild positive' blood result and lack of symptoms out of pregnancy. Is this possible? Thanks in advance for any knowledge.


4 Replies

  • My diagnosis came about with multiple clots on the lungs . It's more common in pregnant women than it is in men I am a MAN lol. It's almost certain you've had this all your life. You should be seen by a haematologist and you might but hopefully not be on medication for life like me.

  • Hi Catherine

    It's a really valuable question you pose; can Hughes occur in pregnancy then go into remission when the baby is born? As you will know, this is certainly the case with gestational diabetes. So, does gestational Hughes Syndrome exist?

    I don't know the answer to this but I know someone who might. It's such an important question for many women so I'll ask my neighbour who is a Consultant Obstetrician. I know she's clued-up on Hughes so fingers crossed! John.

  • Hi there, lots of us have had a history of funny and strange things.. which when the diagnosis comes rolling in, add up into pieces of the jigsaw and make sense. Certainly my history is like that. Unfortunately some medical professionals only know about the half of it and think it is in pregnancy only. However some of us mainly have the problem in pregnancy, I am like this, I had lots of dvt's in my first pregnancy, and was treated adequately for the rest of them... however I have had what I now believe was a TIA, and my twice daily aspirin has significantly improved things, also cut down the severity and frequency of my migraines. I believe the condition must be kept an eye on in detail as some people can have no problems then develop problems out of the blue, We have to be our own detectives and record keepers. Best wishes to you. Mary F x

  • You pose a good question and I think there is no set answer because everyone with this condition is different. I was only diagnosed with this condition 2 years ago after a Stroke but looking back over my life its obvious I have had it from at least my early teens. Of course back then no one knew what it was so the miscarriages were just one of those things but I do believe that what you say about remissions is probably correct. I went for up to 10 years after the birth of my second child before getting a flare and after that one was another few years. the gaps seemed to get shorter before other autoimmune conditions joined the party and it was difficult to tell what was what before the PE hit and I still was not diagnosed. Who knows how different things may have been had I been diagnosed and properly treated earlier. It is only this present generation who will be able to answer that question in the years to come. xx

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