Lupus positive and pregnant

Hi All,

I suffered a miscarriage in my second trimester during 20weeks. Did my blood tests after 6 months of miscarriage and found I am Lupus Anticoagulant positive whereas my Antibodies IGg is negative. I am now 6 weeks pregnant and have seen the Rheumatologist. He said he couldn't recommend me to take Heparin since Antibodies are negative. He has made me take another blood test for the same. I am very scared if it happens to me all over again. I cannot bear the loss of my first child to go through this all over. Please suggest me if I do need to be under Heparin if only I am Lupus Anticoagulant positive. Please help.

3 Replies

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  • Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

    I am very sorry to read about your miscarriage and this must have been devastating for you. I also understand why you are worried. I gather you are living in the UAE and that your specialist is reluctant to prescribe low-molecular weight heparin which thins the blood and does not cross the placenta.

    This is my suggestion as you live in the UAE. If your specialist can do this, so much the better. If not, I recommend the following.

    The doctor who discovered the antiphsopholipid antibody (Hughes) syndrome and THE expert is Professor Graham RV Hughes. He can be contacted privately at The London Bridge Hospital.

    You need to have any blood tests and all your medical history regarding your condition. Basically it is a CURABLE blood disorder. Instead of the blood's consistency being good, the blood becomes "sticky" (it is also called "sticky blood") which means that oxygen, carried by the blood, may not reach all the places it should, such as the placenta and therefore the placenta "dies" causing a miscarriage, usually before 10-12 weeks. By "thinning" the blood, the oxygen will be carried to the placenta.

    Here is the URL: londonbridgehospital.com/LB...

    Here is the information:

    Consulting Address

    The London Lupus Centre,1st Floor, St Olaf House

    London Bridge Hospital

    London

    SE1 2PR

    Consulting Sessions:

    Tuesday AM, Wednesday AM, Thursday AM

    Secretary:

    Alison Ward and Kim Bainbridge

    Telephone:

    020 7234 2155

    Fax:

    020 7234 2462

    Email:

    londonlupuscentre@hcahealthcare.co.uk

    I recommend you phone and explain your situation and how to speak with Professor Hughes - who is wonderful (I know him well). If your doctor can speak with him for a consultation, so much the better. Otherwise, you will have to take charge of your situation. You will need to have copies of your blood tests and any relevant information

    I am NOT a medical doctor and in no position to give medical information. I can tell you that blood tests can and do change. In addition, you have already had one miscarriage and I am aware of how this impacts on you and your family. I do know, Professor Hughes will be very sympathetic and will try to give you the best advise.

    Don't give up - email, phone and ask your consultant to speak with the doctor after whom this syndrome is named: Graham RV Hughes!

    You are going through a great deal and probably still mourning the loss from your miscarriage, which is why you may find the following information helpful.

    We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

    By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

    When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

    Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

    I look forward to talking with you more!

    Sometimes we need to talk to people who understand and who are not family or friends.

    With good wishes!

    Ros

    Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.

  • Thank you so much for your caring support Ros. I will surely contact this expert and get some guidance. Appreciate your time and effort in putting this across.

  • Please do. I have just referred another woman who has had numerous miscarriages and was diagnosed with the antiphospholipid antibody (Hughes) syndrome. She is self-injecting with low molecular weight heparin which thins the blood and does not cross the placenta. Her pregnancy is going well.

    Professor Hughes was at St Thomas' Hospital, London which has a Lupus Clinic and a special pregnancy for those with the antiphhsopholipid antibody (Hughes). Many lupus patients also have APS, but many others just have APS alone. Their hospital walls are filled with baby photos!

    It is also important that you receive medical advice as there are other symptoms like headaches, memory loss and other more serious issues.

    Please feel you can contact me any time.

    With good wishes,

    Ros

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