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Hughes Syndrome APS Forum

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I have recently been diagnosed with aps after 6 miscarraiges, has anyone had a successful pregnancy after this?

sarakat profile image
24 Replies

I fear at the age of 42 im running out of time and scared I will miscarry again

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sarakat profile image
sarakat
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24 Replies
Manofmendip profile image
Manofmendip

Hello Sarah and welcome.

As a man I am not best placed to answer your question but I am sure that there will be many of our lady members on here who will be able to help you.

Where are you from and who is managing your APS?

Best wishes and regards.

Dave

Maria39 profile image
Maria39

Hi sarakat,

I don't want to put the negative point here but just to let you know that I'm 40 and I've just had my 5th miscarriage, yesterday I had the surgery in St. Thomas. This has been one the most horrible and devastated week of my life. I don't have children and last year in December my GP told me that I am peri-menopause (I am only 40!!). When I felt pregnant at the beginning of the year I thought that this could be the one but I was wrong.

I don't know who had a successful pregnancy into the forties and what have they done.

For my side, I don't want to waste more time and I've just stated to look for other options.

I'm so sorry and I wish you all the best and good luck

MaryF profile image
MaryFAdministrator in reply to Maria39

I am so sorry that life is currently so tough, and you are brave, thank you for being open about your situation on here, you are not the only one. I hope you have some good support around you? Please do look after yourself, sending big hugs! MaryF x

janelle78 profile image
janelle78

I have APS, 36 years old and I am currently almost 8 months. Am on 40mg of enoxaparin (generic lovenox) and baby aspirin and so far so good. Actually last year this time I suffered my fourth miscarriage in a row since 2010. Wish you the best of luck and God Bless!!

Maria39 profile image
Maria39

I was on 5,000 IU/02ml of Dalteparine + 75mg of aspirin and it didn't work :-(

Hopingforababy profile image
Hopingforababy

Im so sorry for your losses. I understand your pain. I've lost 4 babies altogether but I'm currently 20 weeks pregnant and so far all is ok. What made the difference for me was starting the heparin at 3 weeks (before I got a positive test) I did this because I had some left over from a previous (unsuccessful) pregnancy (I thought I'd see what would happen) and the consultant I saw at St.Mary's said that the lupus antibody that I have has a direct impact on implantation and heparin effectively blocks this antibody. I figured that if I started the heparin later like last time (as wasn't given it til 5-6 weeks pregnant) then that's 3 weeks with no protection when the implantation is actually happening!! Also my godmother has Protein S deficiency - another type of sticky blood and had twins at 44 with aspirin and heparin! Don't give up but see a specialist!!

Danimgw profile image
Danimgw

First Of All you are lucky to be alive. Get the right anticoagulant treatment and try again.

Hey I wanted to have kids but a stroke, heart attack and lupus I thought kids for me were to much. I enjoy time with my nephew and nieces though.

MaryF profile image
MaryFAdministrator in reply to Danimgw

I bet they have the most fantastic auntie on the planet! MaryF x

Kate_clot profile image
Kate_clot

I'm very sorry for your losses. I have APS and am lucky to have been successful due to daily enoxaparin ( celexane) injections, for the entire pregnancy and 6 weeks after delivery. Despite hyperemedies gravidarum (which resulted in 20 kg weight loss and no weight gain), very Calcified placenta, low birth weight, & two vessel cord disease. One healthy baby girl and one clot free mother. In a way having a diagnosis of APS is a good thing because you can get the right treatment, if only my mother and grandmother had been so lucky they lost 9 babies between them. Don't give up, take care.

loublou profile image
loublou

I have only just been diagnosed with sero neg apl and lupus, although obviously had it all my life. I am now 49 and started my family young. I was pregnant at 20 and had pre-eclampsia. My son was born small but full term. I then had 3 miscarriages. My brxt son was born elective sectoon at 36 weeks. I then suffered another miscarriage 5 yrs after that. It can be done....I was 'pre-Hughes'.

MaryF profile image
MaryFAdministrator

My sister years back had seven quite late miscarriages, and then had one successful pregnancy but it made her very ill and they only both just made it, however I will state she had no diagnosis, and no form of help or anticoagulation, another tale of seronegatviity involving multiple clots in the legs and lungs! MaryF

I am very sorry to hear of your loss, my deepest condolences; I can only imagine how you must be feeling. I was diagnosed after my second pregnancy when I had a DVT and two positive blood tests. In my third pregnancy I was given heparin twice a day from 12 weeks pregnant through to 6 weeks post delivery. I have never been in your situation to know whether this would suit you but your hospital should talk to you in more detail.

worsie26june2013 profile image
worsie26june2013

hallo. I am from south africa and has lupus and sjorgems with the hughes syndrome. I also had 2 miscarriages. I got pregnant few years later, suffered with olacenta previa and had difficulties. Was in hospt from april till my son was born prem in july. My gyni was excellent and although he had to stay i the incubator, he is a fine yoing man today. I believe you will get pregnant. Just make sure your gynie knows about everything. i will pray that you will be blessed with a child. Someone who didnt suffer from miscarriages cant understand, but we who did, do. Do not give up, believe and miracles do happen. Maudé

Bonnie39 profile image
Bonnie39

I had difficult pregnancies and a couple of very sick babies thanks to this. However I was under a fantastic obstetrician whose specialism is in women who have high risk pregnancies and multiple miscarriages. He is a fabulous man. I don't know where you are based but please look up the work ofMr Hasan Shehata.

Sunshine39 profile image
Sunshine39 in reply to Bonnie39

Hi

Have heard good things about this man before. Isn't he the obstetrician who helped a lady go full term. who was in the media recently, and had had 20 miscarriages previously? Where is he based and does he take private patients?

Bonnie39 profile image
Bonnie39 in reply to Sunshine39

Hi Sunshine. It is he I speak of! He is head of womens services at Epsom and St Helier Hospitals.

I think he may also work privately, but he is a BIG defender of the NHS (as I am), standing up for our hospitals publically where certain people are scheming to have them shut.

Try contacting him here, if you cannot get an NHS referral to him.

miscarriageclinic.co.uk/pat...

I was diagnosed with ApS after a miscarriage at 22 weeks. With my 2nd pregnancy I took asprin everyday and my son was born at 29 weeks weighing 2lb 15oz ( he is now a healthy 14 year old). My 3rd pregnancy I took asprin and did fragmin injections everyday and my son was full term weighing 8lb 2oz and is now a healthy 10 year old. The injections were tough but worth it. I hope you can get the help and right medication and good luck for the future :)

Rhian21 profile image
Rhian21

Hi, I also was diagnosed after having 6 M/C's at 40. I had one full term (miracle) pregnancy when I was 31. Shortly after my APS diagnosis, I divorced and realized that I would not be trying for any more children. However, my point is that had I kept trying I would have been encouraged after diagnosis to try again with the realization and promise of the correct support and meds that were desperately missing in my earlier pregnancies. I guess the age thing is a barrier if you feel very unwell, but I know fit and healthy 40+ mums who are coping just fine with their new babies. So I guess the question I would want to ask you is, do you feel supported to try again by Doctors, partner, family and friends. Did you have meds in your earlier M/C's. I dealt with a lot of emotions and practicalities after my diagnosis. I still don't feel supported with my diagnosis and without any support life can get complicated and hard. But it may all be so different for you if you are supported? I found that I coped well with my M/c's at the time they happened but am now struggling with the emotions involved six years after the last one which was an emergency hemorrhage, it's like a delayed reaction. You are very brave to consider trying again..but with the right help it is an option for you of course, good luck, sending love and hugs x

kaysie profile image
kaysie

Hi there please do not give up hope I was nearly 44!!!! Yes 44!!!! When I had my son I have APS, SLE, fibro, raynauds and suffered four losses and I gave up but after treatment of clexane, I also had a PE at 36 weeks I gave birth at 37 weeks by c section to a beautiful miracle baby boy. Please have faith and I will say a little prayer for you x x

Bonnie39 profile image
Bonnie39

So sorry for your losses.

I don't know where you are but I'd like to recommend my obstetrician. He is based in North Surrey and his name is Mr Hasan Shehata. He specialises in women who have repeated miscarriage aand difficult pregnancies and is just wonderful. He also understands APS.

JulieV profile image
JulieV

His sarakat. Yes, I had over 7 miscarriages and 7 ivf's. I had heparin injections, steroids and every alternative therapy I could think of. Finally I took a break and simply took 75mg aspirin daily - and fell pregnant. It was a really sickly pregnancy that did my body in- but I was smiling all the way through. I was on crutches and had hype remedies / but who cares?! I have a beautiful son now. My story was featured in national newspapers because my chances of conceiving and carrying to term were considered 99% unlikely. So there is ALWAYS hope and I shall pray for you. Julie x

lotsoflove profile image
lotsoflove

Hi I have just registered so I could reply to you. I have had 5 m/c before I was told to take 75mg of Aspirin St Marys

hospital this was twenty years ago, I had 3 healthy children although the pregnancies were not healthy lots of bleeding

I then fell pregnant at 40 didn't know I was pregnant so did not take aspirin til I was 17 weeks very healthy pregnancy no bleeding no probs at all was 41 when I had her she's asleep next to me now perfect in every way. Can you have a successful pregnancy after multiple m/c? Yes and over 40 Yes, so good luck and try not to stress when you are pregnant I know it's easier said than done. good luck x

GraceEllie2012 profile image
GraceEllie2012

I had three miscarriages before I was diagnosed. With proper treatment, I think the odds do go up considerably for a successful pregnancy. Though, there is still a risk of premature birth and miscarriage. Treatment did help me to have a successful pregnancy, but I did go into labor prematurely. It all worked out OK, but it's good to know the risks. I definitely think it's worth trying for, if your doctors think it's safe. I'm so sorry for all you've been through. I know how heartbreaking it is.

Julieanne profile image
Julieanne

Well, if my story is anything to go by there is hope for all of us!! I had my first baby at 34 yrs old, unknown to me at the time that I had hughes syndrome. I had all the symtoms then but of course I had never heard of this condition before, I had very bad anemia, was constantly tired, headaches and aching limbs. I thought this was just part of the pregnancy, but I had to go into hospital as my anemia was so low my baby girl was born 6 weeks premature at a good weight of 6.1oz. Stayed in hospital for a week as she as jaundiced, otherwise she was fine. My problems started when I tried for another baby which I miscarried at 12 weeks, and again at 15 weeks and 11 weeks and last one was at 12 weeks. They finally diagnosed me with hughes syndrome and when I became pregnant again at the grand old age of 40 I was looked after from day one. I was referred to a Well Women's Hospital in Liverpool who were brilliant and knew what they were talking about as they specialize in this condition. This pregnancy was not plain sailing, I started to bleed at 12 weeks (though here we go again) but I was going to Liverpool the next day anyway, and by the end of Sunday evening the bleeding had stopped. I had a scan and everything was allright, they can't explain the bleeding but they started me off on heparin injections which I had to inject myself three times a day and I was taking baby asprin too. I had to stop taking the heparin as I was terribly allergic to it and at 8 weeks after taking it I stopped, by then the heparin had helped the pregnancy to progress and I was now 20 weeks. At 33 weeks my waters broke and two days into labour my baby boy was born and he weighed 4lbs 8oz - he too was jaundiced but otherwise fine. Both my children are now grown up my daughter is 23 and my son is 15. So take heart that there is light at the end of the tunnel, unfortunately for some of us it just means we have to carry on this road for longer. I hope my story has helped those who think that in their 40 + that there is no hope - there is, just keep going. I wish you all the very best for a healthy, beautiful babies. xx

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