Trying to get more information

I was told I had pregnancy Lupus 15 years ago when my daughter was born at 26 weeks and died 2 weeks later, in which time I had a clot on my lung. I've had treatment and gone on to have 2 children, but after having tests for problems lately the doctor informed me that I had hughes syndrome. I was told when my daughter died that I only have problems in pregnancy and that I'm high risk of a clot and that's it, I've only recently discovered that I have a condition that will stay with me for the rest of my life. The problem is I can't get information from anyone medical in my area, they don't seem to be concerned at all, they said that I should consider taking aspirin and that's it. I have been suffering with symtoms for years which I think are linked and no one seems bothered, does anyone know where I could get some more information?

12 Replies

oldestnewest
  • Hi tracey,

    welcome to this site. You should find lots of information and support on here. The Hughes syndrome foundation website has lots of info on symptoms, tests treatments etc. Sorry to hear of your loss and the difficulties with Dr. Not rare on here sadly. I'm no expert but with previous loss and lung clot, you should be referred to rheumatologist. Any questions ask away hon. We all in same boat and Will try and help. Take care. Gentle hugs love jessielou x x x

  • Thank you for your comment it was really nice of you, I am going to keep pushing to see someone who knows about Hughes, its nice that we can all talk and hopefully help each other, I was starting to think that some of the symtoms I've been suffering from were in my head x

  • Hi Tracey

    I don't know where you live, but I would suggest you actually get an appointment with the haematologists at St Thomas Hospital. Ask your GP for a referral to Professor Hunt. I am under her care, and what she doesn't know about the medical management of Hughes isn't worth knowing. Haematologists usually have shorter waiting lists than rheumatologists.

    Sorry about your loss, but although you have Hughes for life it is manageable. Having had a clot it sounds like you should be on warfarin not just aspirin.

    Take care Ann

  • Hi Tracey

    My lovely daughter is now 16, but between 16 -20 years ago I went through pregnancy problems. I lost two babies at 21 and 26 weeks. I call them stillbirths, not miscarriage :) its easier. I also had a son who was born by cesarian at 28 weeks who was very small for dates (1lb 1oz) but sadly we lost him at 16 weeks.

    I felt compelled to reply to your post because way back then, hughes was basically unheard of. My obstetrician noticed that what was happening to me was also happening to her lupus ladies, but yet my lupus blood works were not showing as me having lupus... but what she did not know (which we do now) is that you can have primary lupus and secondary hughes, but NOT the other way round.

    I was lucky that she treated me like her other lupus ladies and I had, although still very early at 30 weeks and my daughter small for dates at 1lb 13oz, a successful pregnancy. She treated me on heparin as soon as I was pregnant till 14 weeks, then on warfarin until I gave birth at 30 weeks by cesarian. She was at that time, stabbing in the dark with all her medical experience and knowledge. She was a wonderful lady and we gave my daughter her name as a 2nd name :)

    I get angry when I see it being termed as pregnancy related only. Its not. We have it all the time and the risks remain all the time. It appears that from all the different stories and people I have met that it makes no odds whether you have had a clotting episode or not, hughes still affects us in our daily life.

    My consultant first sent a diagnosis letter out which stated Obstetric Antiphospholipid Syndrome. I asked him to change it, which he did to just APS because that was misleading and inferred it was only during pregnancy.

    Drs have come along way since my story started many moons ago, but sadly there is much farther to go with them and we still encounter heels being dug in, arrogance and ignorance on our condition.

    If you firmly believe there is something not right with you then you stick to your guns and just keep going back to your GP, no matter how many times you feel you are *annoying* them. They will cave and listen eventually..

    There is LOTS of information, right across the net. Just google. Read it and get knowledgable on the subject. that way you can question what any doctor says to you :)

    Good Luck

    :)

  • Thankyou all for replying to my comments, I've never met anyone else with hughes so this is quite something for me, because the doctors at the hospital don't seem to be concerned I'm not sure how worried I should be. The last few years I've been experiencing awful memory loss, visual problems and joint pain and the haematologist isn't concerned at all. He said it could be life threatening if I had Lupus as well (which I don't) but otherwise he doesnt seem bothered, I asked him if this will shorten my life and he found that amusing, I'm only 41 years old and I have 2 children to think of so I think I will go back and ask for a referral to someone who know's what their talking about, thank you all for your advice xx

  • Tracey,. it would help if you told us where you are because someone could recommend a Rheumy as you can do it through choose and book. Also if your close to London or London is within reasonable travel distance a referral to St Thomas Hospital :)

  • Hi tracy try this link to another blog i wrote it gives you some basic information and maybe you can wave this infornt of your GP and get a referral and I agree with Annie it would be great if you could tell us where you based as there maybe a good Doc near you.

    hughes-syndrome.healthunloc...

  • Thankyou for your comments, I live in Pembroke Dock in Wales x

  • Hi Tracy, I too carry the "obstetric aps" diagnosis and yet my brain damage has occurred since the birth of my last child, 5 years ago. I listen to my own body now and the others are so right. Research, research, research and then don't stop nagging until you get to a rheumatologist. The great thing is more and more people in the medical profession are becoming aware of Hughes and you have this forum to support you so you will get there.

    Keep smiling, Love Sharon x

  • Hi Tracy

    I can understand your frustrations, for some reason referals seem to be pretty hard to get in Wales. I have recently changed my GP practice and have had some amazing support from the Doctors there (more in three months than 11 years at the last one) My GP came up with several names of Rheumatologists that work in the Cardiff area, right the way up to Bridgend and he took the time to make a few phone calls to find out who would be most appropriate for me. If you Google Rheumatologists Cardiff you will get some great results and can go armed with their details to your GP. I know it seems as if everything in Wales happens in Cardiff but you may feel that it is worth the journey to get to see the right person.

    Suzie x

  • Thank you all for your advice, I will be chasing this up because my symtoms are affecting my life on a daily basis x

  • Hi tracey

    I just wondered how you doing. Hope ok. Take care hon.

    Gentle hugs love jessielou x x x x x x x x x

You may also like...