I'm trying to decide whether to try for another baby. I have one son conceived naturally, normal pregnancy, c-section. It's taken 4 years to discover a possible reason for my recurrent miscarriages, antiphospholid antibodies and aggressive antibodies against my husband's HLA gene.
I'm waiting to speak to my reproductive immunologist but it will possibly take a while to get an appointment so in the meantime I'm trying to understand whether pregnancy can cause antibodies to flare?
I don't know if I have Hughes syndrome, I plan on being re-retested but any previous tests (2011, and early 2013) were fine.
So, I guess I don't want to do anything that could make things worse. Can pregnancy cause a flare or Hughes syndrome?
Thanks.
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Scootermom
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Some woman only have detectable antibodies when pregnant or shortly after so yes pregnancy does seem to cause "flares" which makes sense as we have overactive auto immune systems and the baby is seen as foreign.
For those with Hughes we need extra monitoring and care whilst pregnant which generally involves low dose aspirin and some form of low molecular weight heparin. You may or may not have other medications thrown in depending on your own personal health issues. It sounds like you have an added problem with antibodies to your husband which will probably involve other considerations.
Certainly something to discuss with your medical team.
In hindsight my health problems stretch back to early childhood, however regarding pregnancy, with my first one, I had multiple clots in my legs, I had been on the look out for something like this, having had one sister lose seven babies followed by clots in legs and lungs, then my next sister pregnant a few weeks earlier than myself also had a DVT followed by a PE in lung. So. at the first hint of trouble, I was carefully looked after as an inpatient for many many weeks in St Thomas's many years ago.
My next two pregnancies on full Fragmin and very careful monitoring. After pregnancy I had huge flares, one which put me in hospital due to becoming completely immobile on more than one occasion, however I had not had my Systemic Lupus diagnosed at this stage as it had not shown up in tests Some of us remain stubbornly Sero Negative and take a while to pass tests. So I tell this in detail to indicate that yes, over activity and flare ups do occur in pregnancy, but with the right care and expertise it can all be managed highly successfully. I owe my three lovely children to careful teams within the hospital and a great GP on the look out for me at the time when I lived in London.
I am newly diagnosed with lupus and aps. I had a normal first pregnancy. Then when I was 31 I had a stroke, which was not treated at all and left me without speech and some movement fot many months. In my second pregnancy I lost a twin to my son ataround three months and waa diagnosed with spd and carpal tunnel but other than that it was fine. Then I had a miscarriage at about the same time as the lost twin. Then I had another pregnancy which saw me with severe spd. That baby was born at term after a rupture of membranes at 28 weeks, but required to be put in a coma for several days and aggressive treatment for double pneumonia and sepsis. My last pregnancy saw me go into labour at 29 weeks and despite steroids was born at 35 weeks again with pneumonia.
Other than joint weakness and pain I felt the best I've felt in ages. I was full of energy, had no morning sickness and felt generally very positive. Until diagnosis last year I'd said that pregnancy made me feel great. Now I think what it actually did was make me feel normal! I wish I could feel like that again but another pregnancy is not an option for me. I'm hoping the hormone changes turned down the lupus (I find my flares coincide with menstrual cycle) and once my consultant gets back the specialised blood tests and can start me on treatment I'll get to feel better again.
Hi. My various doctors look at my equivocal blood work and arrive at different conclusions as to whether or not I have lupus. But I too noted increased fatigue and inflammatory symptoms close to mensis time. And I too felt pretty good through pregnancy.
At one time I had an alternative med doc who tried me on a bio- identical progesterone cream. I loved that stuff! I had energy, less random pains, and exercise actually resulted in increased muscle mass!
Then he took me off of the cream, put me on pills that also contained estrogens and I went back to feeling bad--which was my normal.
Finally I finished menopause and now I actually, at age 58,am in one of the healthiest, most energetic times of my life.
Dont know if this post helps, but it might give you some ideas to discuss with our doc.
My aps only appeared with pregnancy, I had 2 miscarriages followed by two births, both at 35 weeks and low birth weight. Then I didn't get any real problems until I started hrt and its been all down hill since!
Have you had a good look at the actual charity website, lots of useful information on there, plus regular updates, and of course lists of useful medical people? MaryF x
Hi, well it totally did for me. I was always the sickest with Hughes during pregnancy and lost four babies. I was able to have three, but the pregnancy's were hard, very sick, pre-eclampsia & toxemia, and they all were forced to be born early (induced). I now know why this happened but no Doc's could figure it out then. I realized what it was from looking at genetic blood disorders. Talk to your specialist about this. Lisa
I know this post is from 2 years ago, but I have been searching for someone who has posted with symptoms similar to mine.
I have struggled with infertility for 3 years. This past June my husband and I did our first round of ivf, after many other fertility treatments. Thankfully, the first ivf attempt was successful and I found out I was pregnant in July. Unfortunately I began bleeding in early August. Thankfully ultrasound still showed one embryo. Things progressed according to plan until 15 weeks when my blood pressure increased and I had protein in my urine. Things only got worse from there. I began having horrible headaches, vision impairment, and swelling. I developed hellp syndrome at 17 weeks, which I am aware is unheard of. At 19 weeks and 5 days I was forced to deliver my son to save myself. At my postpartum visit all types of autoimmune testing was completed. Tests results came back showing abnormal lupus anticoagulant, abnormal lupus inhibitor, and reactive complement c3 & c4. None of my physicians will give me definitive answers on what happened to me during my pregnancy, only that pregnancy threatened my life, and I should not get pregnant again. Now I am left searching for answers and being my own advocate. I do not want to give up on being a mother. Any information would be so greatly appreciated.
Thank you all so much for your responses. I've decided to proceed with the IVF clinic's first ask which is to have a hysteroscopy and a scratch. I'm going to be flying to the clinic in Greece for this on Thursday as they have work with my reproductive immunologist before.
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Hi, can you develop hughes syndrome as you get older? I have had to healthy pregnancies but on my third I had a miscarriage at 16 weeks 
