Anyone have any advice? I am pregnant. (I have Hughes syndrome & Lupus).

[kirstyleigh]

If I have worked it out correctly, I am around 5weeks pregnant. I have started taking the heparin injections daily and 150mg aspirin daily. I had my follow up appointment with my consultant, who seems to be very happy for me and my partner. But after losing my little man at 21 weeks, I can't help but worry throughout this pregnancy. I am trying my hardest to stay positive to relieve my body of as much stress as possible. But I can't help sometimes but to assume the worst. Its very stressful having to inject my stomach every day, and I get angry when I see women with perfectly healthy pregnancies, taking it for granted. I would literally give an arm & a leg to have a normal, healthy pregnancy. I was wondering if anyone could shed some light on this for me, people who have the same illnesses as me who have gone on to have children. Did the Heparin injections work for you? Thanks xoxo

[MaryF]

Hi, there yes I had three good pregnancies using this system of medication, are you also a member of the Hughes Syndrome Foundation forum on HU, lots of us are on both for the Lupus and Hughes Syndrome. I am glad you have got good medical care! MaryF

[ush1401]

Hi kirstyleigh, my lupus was triggered off when 2nd child was born. I then fell pregnant again and had to use blood thinning injections. Most of the ones i was given gave me a horrendus rash in the end i carried on regardless and used clexane sometimes i injected in stomach then in thighs. I had a rough pregnancy but in the end had a lovely baby weighing 6lbs. Hope u all the best kirstyleigh. xx

[kirstyleigh in reply to ush1401]

Thank you for your response. Im currently injecting the heparin into my stomach, but I feel as my pregnancy progresses, I will move to my thighs. It's so stressful having to inject and take medication everyday on top of worrying about what may happen. Im sorry you had a rough pregnancy but I am very happy to hear you have a lovely baby now. Thank you. Take care xo

[anthroprof]

I think I can shed some light.

Is your Vitamin D level at 50 to 80 ng/ml as the Vitamin D Council recommends? Are you taking the 6000 IU/day supplement they recommend for pregnant women?

Do you know that most cases of Lupus (as well as Autism) are caused by Vitamin D deficiency? Did you know that illnesses like lupus cause a further increase in vitamin D need? Do you know that many physicians in the US are already treating Lupus with dosages recommended by the Vitamin D Council?

If you are unaware of this please visit my free website, leonardogreenfield.com and read the article on Vitamin D and health. It explains what vitamin D does and why autoimmune diseases are caused by vitamin D deficiency.

You can also visit and explore the free non-profit Vitamin D Council website. This is the international clearinghouse for the world's leading vtiamin D researchers and clinicians.

Regards, Anthroprof.

[behappy1]

Hello I'm so pleased to hear you've fallen pregnant again. I remember reading your earlier posts. It's heart warming to read your good news.

Anyway, Sounds like you are on the correct meds. I also take plaquenil too and a bog standard pregnancy vitamin. Initially I also took extra omega oils as I was told it can calm immune system.

Had bleeding from 5 -11 weeks. But generally been fine since.

I'd request an early scan, 7 weeks. Then You need to get uterine artery pressure checked at 16-18 weeks to see if blood flow to baby is ok.

I'm currently having weekly scans as I've got excess amniotic fluid. My stomach is ridiculous. I'm 30 weeks but measuring 35. Uncomfortable!

Wishing you all the very best in this pregnancy. Xx

[kirstyleigh in reply to behappy1]

Thank you Behappy1 I'm very worried, but I am taking it day by day, and trying to remain positive. If I have worked it out correctly, I am 6 weeks pregnant today. And so far haven't had any blood loss, which is relieving considering, my last pregnancy with my little man, I had 3, first at 6 and a half weeks, then 9 weeks then 16 weeks, I was told it was a 'cervical ectropion'. I have my first scan in 3 weeks so I should be around 8 weeks pregnant then. I then have to have a scan every 4 weeks, and swabs taken a week before each scan to ensure no infection is present. I am a little worried, because my belly is rather big for 6 weeks, and going off my last period there isn't a chance I'm any further gone. It could be that my stomach hadn't fully returned to normal since having my son. Or that I have more fluid this time as last time I had very little, then eventually none. I wish you all the very best with your pregnancy also. Thank you xox

[behappy1 in reply to kirstyleigh]

I pray that all will be well for you.

Regarding your belly. Often you get bigger much quicker in subsequent pregnancies. I've had a few miscarriages and each time, I too was bigger much earlier. This time, my physio told me I looked about 4 months when I was just 11 weeks!

my fluid is high and that has caused me to have a big belly.

I'm sure given your history they will monitor your fluid. However, be your own advocate. Push for regular checks on fluids, blood flow & growth. Take care xx

[Metlack]

Hi I have lupus brought on by my previous pregnancy and have just had a healthy baby 6lb 8oz 8weeks ago by planned c-section at 38wk

I injected daily in my thigh as I did not feel comfortable doing so in my stomach I had an early scan at 6 1/2 wk and also had some bleeding till about 12week only small amounts with a little stomach pain like cramping towards the end my fluid was low around baby

I had a lot of extra scans it is a worrying time but if u have all the extra checks and monitoring it makes it a little easier to worry less

Good luck and I wish u all the best

[sylviaweller_79]

Hi, my lupus was diagnosed after my first baby was born. He was 8 weeks premature and blue but now he's 18 and doing great. My daughter was also born premature 5 and half weeks and so tiny but she's 16 and also doing great. Try not stressing out. I also got upset other women took their pregnancy for granted, but you are unique, all lupus suffers are, and although there will probably be problems in your pregnancy and your worried, its all worth it! Keep in touch with your doctors, don't ignore anything and everything should be fine xx