Pregnancy with Hughes Syndrome

[INCR]

Hello! I am currently pregnant and diagnosed with Hughes Syndrome. Would you consider this a high risk pregnancy? My doctor believes there is no reason to be at home and therefore that I can work. I'd love to ear your experiences! Thanks

[MaryF Administrator]

Hello again, in answer to your question, (congratulations by the way). This depends on your line of work, and I am guessing that you are under a designated Hughes Syndrome/APS specialist. Every individual and their pregnancy and mix of medication is personal to them. If this is your GP saying this, presumably they are in touch with your main specialist and well read medically speaking regarding Hughes Syndrome/APS.

MaryF

[INCR in reply to MaryF]

Thank you for your reply I'm not yet under a designates Hughes Syndrome specialist but I will soon, so I'll try to get them in touch...

[lupus-support1 Administrator]

Congratulations!

What do you feel? If you are feeling anxious, discuss this with your APS/Hughes specialist. I would hope your obstetrician would also consult with your APS specialist. What do they say?

It will depend on the type of work you are doing and, of course, your medical condition.

I don't think this question can be answered by anyone other than your own doctors.

With good wishes,

Ros

[INCR in reply to lupus-support1]

Hi Ros, thank you for your reply! I'm in week 17 and in the beginning I was quite anxious, since I had 2 miscarriages last year. My job is not physically demanding but it is quite stressful, so I'm afraid that could harm the pregnancy. But probably this is just anxiety talking ...

[lupus-support1 Administrator in reply to INCR]

I am very sorry to read about your 2 miscarriages. This is a devastating experience and understandable you feel anxious.

Are your employers sympathetic? If they are and you can talk to them, you might find they are willing to be flexible during this pregnancy. You will need plenty of rest and reassurance, so your doctor is also there for you too.

If you are worried at any time, call the doctor because their reassurance is what you will need at that time.

I am sure you will be sensible and listen to your body and as I said, your feelings of anxiety are "normal!"

I do wish you well and hope you have an easy pregnancy. You are always welcome here to talk.

With good wishes,

Ros

[merrohawk83]

Hi there - and congrats on your pregnancy! As you asked to hear of others' experience, I will share mine!

I was diagnosed with APS after a stillbirth and multiple PEs back in 2014. I am now 15 weeks into a very high risk pregnancy and have been taking 2x100mg/ml enoxaparine daily, plus low dose aspirin. All good so far, and I am able to work. I have the luxury of being able to work from home though, which helps!

In terms of the high risk nature of my pregnancy, it is to do with the risk of blood clots which could cause issues with the placenta. Working doesn't affect that in my circumstances - so I just ensure I keep active by taking the dog for walks and getting up every 30-45 minutes to keep the blood flowing.

If you have had previous pregnancy complications and/or blood clots a with APS, then it's probably likely that you'd be classed as a high risk pregnancy. Some people have APS but have never had blood clots of pregnancy problems, in which case you may be advised to take low dose aspirin only, and be montiored. I'm not a doctor - so definitely seek the advice of your APS specialist and GP.

Good luck - wishing you a healthy and happy pregnancy!

[INCR in reply to merrohawk83]

Hey! Thank you so much for sharing your experience And congratulations on your pregnancy! I'm about 17 weeks pregnant so we are very close to each other. I'm also taking 2 doses of enoxaparine daily (doesn't that suck?!) plus aspirin. Besides 2 miscarriages I had a stroke some years ago. My ob-gyn is amazing, I was just wondering whether pregnancy+hughes syndrome could generally be considered as a high risk pregnancy. I've been working from home lately but I can't really concentrate so I'm thinking about going back to the office...

Let's keep in touch! I hope everything goes well with your baby =)

[chlowy]

Congratulations

Hope all is going well. As the others say only your doctor can answer that. However it can still be high risk and you'll be able to work. Ofcourse depending on your work. I've had two pregnancies that have been high risk and worked till week 28 and week 25. My work did some adjustments for me, but other than that I worked. I was on klexane throughout the pregnacies. I had a high risk pregnancy due to beeing on clexane throughut the pregnancy. I was marked so in my journal so I was sure to get help if something happend, and that the hospital would know to check in with my specialist. I had check-ups with my specialist and he monitored me and the baby every 14 days or so.

For me working did me good, I didn't have time to sit at home worrying about my pregnancy and got to stick with my regular routine as long as possible.

[INCR in reply to chlowy]

Hi! Thanks for sharing I think you're right: work does take your mind of the concerns with pregnancy! Time in between consultations goes so slowly!! I do need to make some adjustments to work, I appreciate your advice!