Recurrent miscarriages ! 5 in a row - Hughes Syndrome A...

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Recurrent miscarriages ! 5 in a row

Esmes2013 profile image
8 Replies

Hi I am looking for some advice! In all 5 pregnancies my hcg has not risen. On the 4th pregnancy I had a positive APS result and was told if I got pregnant again I would be started on clexane, aspirin, progesterone and hcg injections. I got pregnant a 5th time but my consultant said he needed to check the pregnancy was continuing so had hcg tests over 48 hours surprise surprise they were high on the first but dropped slightly on the second test so another miscarriages has been diagnosed. I am frustrated treatment was not started on a positive test and feel very alone and devastated it wasn't given a chance to continue ! Yes it may not have been viable but I cannot hear it's just one of those things after 5 recurrent losses. Any advice or opinions would be appreciated. I am currently waiting to miscarry yet again all this has happened since February this year and I don't know where to turn😢

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Esmes2013
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MaryF profile image
MaryFAdministrator

Hello and welcome to our friendly and supportive forum, you are in good company on here as so many other woman on here have had a similar path to diagnosis. I am sorry you have had such sad and awful time with your miscarriages. I am pleased that Hughes Syndrome/APS has been picked up and diagnosed. I think you need to attend an appointment with your consultant as soon as possible, and make sure you take somebody with you, to help you with this. You need an advocate to stick up for you and help you through, this could be your most trusted neighbour, friend, relative or neighbour. Do they know you are pregnant currently? It essential that you go and sort out the most viable plan possible with them. Make that call first thing tomorrow morning. MaryF

Hopingforababy profile image
Hopingforababy

I feel for you. It's a grim situation to be in and frankly heart breaking. Sending you a big hug. Where are you being treated? I had several losses and then a successful pregnancy with aspirin and heparin. I'm afraid I don't know anything about progesterone or hcg treatment. Every case seems to be quite different. Do you know which antibody you tested positive for?

Sewnsew profile image
Sewnsew

Hi Esme, have you put miscarriage into the search box? I just did and lots of previous posts came up. You might find some helpful info there! It's very sad all those miscarriages, and so many ladies having them numerous times.

tassie profile image
tassie

Esme my heart goes out to you. It is such a horrible and lonely place to be.

I agree with Mary, take someone with you when you go to see the specialist and ask them to help you remember the questions you want to ask as it can be overwhelming and very easy to forget what you wanted to know when you are on the spot.

Some specialist will wait until you are 6 weeks pregnant before letting you have the clexane but that can be too late for some women. Some need to be on the clexane much earlier and some even need to be on it whilst trying to conceive. See if you can at least get them to let you have a script so you can start at a positive urine test.

Try and get a plan worked out now so you can have everything lined up ready to go.

Half the battle is getting a diagnosis so you are heading in the right direction now.

starships profile image
starships

I am so very sorry for your losses and it is heartbreaking. Are you in the UK? If you are then after three miscarriages you are entitled to recurrent miscarriage tests to rule out any other causes. I was out on aspirin after my third miscarriage but it didn't work and aspirin 150mg and fragmin with progesterone pesseries and 5mg frolic acid from positive pregnancy test and that worked. I would ask for those other tests and a prescription for the fragmin so you can start from positive test. Sending lots of hugs xx

Esmes2013 profile image
Esmes2013

Hi Mary yes they are aware I'm currently pregnant my consultant wanted hcg tests to see if the hcg was going up. It has never gone up in any of my pregnancies. Because we waited it's too late again and my hcg is currently dropping so I'm waiting to miscarry again. I am angry that clexane was not started last week on a positive test. I am seeing my GP this morning to get referred to another consultant as I am pretty sure I suffered a TIA during my last miscarriage and am worried about it happening again. I feel totally unsupported right now it's quite scary.

tassie profile image
tassie

A second opinion sounds like a good idea. Keep trying until you get someone to listen. Mention about the suspected TIA and they are more likely to listen and do something proactive.

It is so very hard when you are in the vulnerable emotional position of miscarrying and feeling unsupported and this is when an advocate ( someone you trust, to go with you) can be so very helpful.

Pearl-a profile image
Pearl-a

Omg, I'm so so sorry, I know and understand how you are feeling. I have been pregnant 5times & have lost 2 babies, one @ 36weeks gestation. My other 3 were all very small - smallest 571grams born 15 weeks early. I have never ever been put on aspirin . I was given a baby aspirin & took lovenox shots twice daily (easier to monitor than haprin) . & put on total bed rest , I could only get up to potty. I have 2 children disabled , CP & autism , giving birth was the scarest time in my life, 3 natural one cesarean. Good luck sweetheart

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