Anyone heard of Hughes Syndrome (Antiphospholilipid Syndrome APS)

[smilesattheweekend]

I miscarried (for 3rd time) in July after seeing heartbeat. Have read Lesley Reagan's book and was interested in the Antiphosolipid Syndrome, I have done a bit of digging around as I wanted to be in the know before my appointment with the recurrent miscarriage clinic in September. I have found a website for Hughes Syndrome which I understand is (AP Syndrome) and was amazed at the stories, research, diagnosis and treatment. I had my son nearly 4 years ago after long period of infertility and 2 mc, but I have suffered with migranes just before I miscarry,also had arthritis after having my son. It seems that this can have periods of being dormant which would explain having my son (although I bled alot in the pregnancy. We tried for 6 years before we had him. I wondered if anyone had heard of this and could share their experiences.

If you are interested this is a link to the Hughes Syndrome website :- www.hughes-syndrome.org/index.htm

[jellybeans]

Hi I am sorry for your losses. I have heard of Hughes syndrome and read Lesley Regan's (excellent) book. I am not sure if I 'have it' although I do have the 'Lupus anticoagulant' (one of the APS antibodies), the hospital didn't seem to know much about it so I am none the wiser. I also suffer migrianes. I have had 7 pregnancies, I have 4 living children from 3 pg's (inc twins) and 4 losses at 6, 11, 20 and 23 weeks. I bled alot with all pg's also and hemorrhaged after one birth. If we decide to try again we would need to take aspirin (I read the chances are between 70-80% with aspirin and heparin). I lost my last pg very early (6 weeks) even with the aspirin but maybe there was something else wrong as losses to APS are usually later on I read. Sorry can't be much help.

[Tuesday5]

I have had 4 m/c and an ectopic. My first was at 13 wk, 2nd at 8 wk after which i was diagnosed with Anti P, started asprin as soon as i next got pg but it was ectopic at 8 wk. Got pg no probs next time, asprin started straight away and after a scan at 5 wk heparin was started and i now have a gorgeous little girl who is 2. Got pg 7 months after she was born started asprin and heparin but m/c at 8 wk, I have my suspisions? that the heparin was faulty, never confirmed. Then got pg again in June this yr, started asprin but m/c at 5 wk, although I feel it was due to other reasons because it was totally different to the other times. My hero gynae told me to wait 3 months before trying again and start my asprin and folic acid before i get pg and as soon as i get a bfp get up to his clinic to start heparin immediately. And that where we are just now, got 2 more weeks to go and we are trying again. Cannot wait, fingers crossed please. It is heartbreaking and there is little you can do. Told it is not hereditery and my little girl will be ok, which is the main thing x

[worzella]

I had a mc at 7 weeks, then DS1, then mc at 7 weeks, then mc at 9 weeks. Diagnosed with anti p by fantastic miscarriage clinic. Took aspirin and clexane when preg with DS2 and was sucessful, then again with DD. Quite an emotional rollercoaster but family of 3 now complete. Clexane injections wern't too tricky and i got used to them.

Good luck!

[FloriaTosca]

Like jb I dont have Hughes syndrome but I too have tested positive for lupus anticoagulant..after 6 m/cs (7wks,9wks, 5wks, 5wks, 11wks and 17wks)..the earlier m/cs were put down to a genetic condition I carry which causes 50% of my embryos to be non viable..but the 6th died a week after an amnio that proved her genetically normal so they finally investigated further and at Christmas they put me on a daily dose of junior aspirin, I fell pg in January and they immediately put me on heparin too...I am currently 33wks pg, still on aspirin and heparin and LO appears to be doing well. Hope this helps in some way

[smilesattheweekend]

Thanks for sharing your experiences with me. It is really good to know it can work out.

I can't wait to go back to the clinic to see what they say, I am back there in the middle of september which seems a long way off!

X

Smiles

[B3CCY]

Hi smiles

Went back to the section in the Lesley Regan book after reading this. Makes you wonder, particulary as she says that this could be one of the explanations as to why a pregnancy is lost after a heartbeat is found. Guess we'll know more when we have the tests. Have posted on any hope to you before reading this

x

[smilesattheweekend]

Hi B3CCY

Hope you are OK. It has been a while since I have been on. I have been to clinic and they said there is nothing wrong. She dismissed the idea of hughes or anything like that and said it was just bad luck. She did ask me to take 5mg of folic acid a day which I have to get on prescription, she only gave me a months' worth so something else to sort out!!! Would love to hear if you have had appointment etc. I have started to try and temp to see when I ovulate but there have been a few mornings when I have had to get out of bed straight away to see to my son, so haven't done everyday!! Not sure really what to do. I have taken it upon myself to take baby aspirin everyday to see if that helps. I might print off the research I have looked at and go and see my GP as I have to see her anyway to get a prescription. Don't really want to go to MC clinic again and they have only said to contact when I get a BFP and they will scan every two weeks.

Sorry to rant on.

X

[B3CCY]

BUMP!
Smiles I have replied on any hope thread. Was wondering where you had disappeared to!

[notmyrtle]

I have APS (with positive anticardiolipin antibodies). I've had one preterm delivery (placenta packed up at 32 weks), a second trimester loss (placental abruption), & a really tough time getting pregnant; I've also have a DVT. I take 150mg of aspirin when pregnant (75mg the rest of the time) and daily heparin injections.

[smilesattheweekend]

Thanks for your messages.

Since posting my initial message I have had another miscarriage. I don't know wheter to go back to the miscarriage clinic, they only did one blood test for APS and I understand that they should do two. I want to try again but dont want to go through this again. If they can do something, anything, that would help. Just feel that they haven't done as much as they could. Any advice?

[RubySlippers]

can you see a hematologist and get a full thrombophilia screen?

I have unexplained DVTs so have had lots of blood tests

i am very sorry that you have suffered with these miscarriages

you could speak to your GP to get a referal

[smilesattheweekend]

Thanks RubySlippers

I think I will get referred. I do have private healthcare but not sure if it covers this type of thing. I wonder if I would get better "treatment". I can ring the miscarriage clinic and see the consultant there but I don't really think much of her.
X

[RubySlippers]

the vaascular society

a helpful organisation to get in touch with

[RubySlippers]

if you have private healthcare then pay for the initial consultation so at least you can get seen more quickly

you can then get referred back into the NHS for further appts

[Verso]

I've just been reading into APS today as I have been referred to Hassan Shehata because of a 2nd missed m/c. Weirdly I have had unexplained joint problems since the birth of DD and I am interested to see APS can result in painful joints.

Although I have an NHS referral I may go private if the appt is 6 months away or more (I'm 37).

[Verso]

smiles - I am so sorry you've had another m/c. I've only had two, but they have both been as intense as losing 'grown-up' people for me - the potential of the baby you have lost seems as intense as missing a person you once knew somehow...

[smilesattheweekend]

Thanks Verso, who is Hassan Shehata? I have checked my healthcare policy and it doesn't cover anything related to pregnancy or miscarriage so won't be getting private treatment. I know that I can ring the hospital and get another appointment pretty quickly, the problem is trying to convince them to get off their arses and do something - now I know it might be that there is nothing "wrong" but I am not convinced they have done all the tests they should have.

You are definately right, it is the potential and the plans you had made and the loss of these as much as the physical side of things.

X