APS - pregnancy loss with treatment -... - Sticky Blood-Hugh...

Sticky Blood-Hughes Syndrome Support
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APS - pregnancy loss with treatment - advice moving forward

Hollyhughes
Hollyhughes
49 Replies

Hi Everyone

I’m new and so glad I came across this group on Health Unlocked. I’m looking for some advice/support/others that have experienced what I have.

I had an obstetric APS diagnosis last May after 2 miscarriages at 8-9 weeks in July & Nov 2017. (I have a 4yo son too & that pregnancy went fine with no complications)

I found out I was pregnant in Dec 2018 and took low dose aspirin from the start & was put on daily clexane injections at 5 weeks. I was also having bi-weekly acupuncture sessions. Unfortunately I went for an early scan yesterday at 8+5 weeks and although the baby was the right size - there was no heartbeat. I’ve had a D&C this morning & it’s been sent for karotyping although my doctor is assuming as all 3 losses were at 8-9 weeks it’s immunological and down to the APS.

I guess what I’m looking for is any similar experiences? Anyone have a loss on treatment and then gone on to have a successful pregnancy? Any statistics on loss on treatment then a successful live birth? Any additional treatments I should look at/speak to my doctor about? I’ve read about steroids/progesterone supps in addition to blood thinners/getting egg quality checked again. Anything I can do naturally/through diet to improve APS? Should I be on treatment outside of pregnancy? (Loss is my only symptom- no history of clots/stroke//heart problems to date so I’m assuming not) no lupus - only a high level of the igm antibodies.

My doctor is going to look into referring me to a recurrent miscarriage and APS specialist. I’ve fallen quickly with all 3 (which after 2 years of trying for my son still surprised me every time) but my body is just not keeping them.

I’m 38 so time is against me. (Hubby is 44) I desperately want a second child but not sure myself or my husband could cope with a 4th miscarriage - that’s of course if he even agrees to give it another go.

Any advice, experience, stories or input would be much appreciated.

Thank you x

49 Replies
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Wittycjt

I wish to welcome you. I personally have not experienced this, I am so sorry for you loss, i can only imagine how painful this is. I assure you others will be along shortly due to time zones. It is a friendly helpful group. Where are you located?

While you are waiting go to the other website GHIC.Com ( a charity website affiliated with this one, inclusive of Professor Graham Hughes the pioneer for this disease, aka “Hughes” and have a look around. All the best, Cindy

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Hollyhughes

Thanks so much Cindy, I’ll have a look at the website. I’m in London.

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KellyInTexas
KellyInTexasAdministrator
in reply to Hollyhughes

Welcome HollyHughes.

We are delighted to be able to support you.

I am now 49, so past the child bearing time in my life, but we also had multiple early miscarriages between 8 and 10 weeks, including an ectopic rupture.

I was undiagnosed at that time.

We had two successful pregnancies between multiple losses, I’m happy to report, and that was with no help, my latest at age 32.

Minor correction to wittycjt’s web address:

ghic.world/

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Hollyhughes

Thank you Kelly. I’m sorry to hear you went though multiple losses but glad you had two successful pregnancies even without treatment, it helps me to stay positive that it can happen despite the odds.

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KellyInTexas
KellyInTexasAdministrator
in reply to Hollyhughes

Of course, Holly. You’ve had a very tough day, and as HollyHeski says, and I agree, you do need a little time to restore yourself in every way.

We went through genetic testing, ( all testings we’re fine) and I was considered a very high risk pregnancy. It was certainly baffling.

I hope you manage to sleep well.

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MaryF
MaryFAdministrator

Hi there and welcome, sorry to hear about your losses, I hope you are recovering and drawing friends and relatives close to you, at such a difficult time.

Are you in the UK? If so it is very important that you have a consultation with a medical consultant who fully understand every detail of this condition, we have a list over on the right hand side under pinned posts and also on our charity website: ghic.world/ A good consultant would not only look at your Hughes Syndrome/APS diagnosis, but also check out your Thyroid, alongside your levels of B12, D, Folate and Ferritin, and in some cases women can have very log progesterone also. However a lot of us on here are unhappy with the Thyroid testing on offer, so often order our own more detailed tests which usually include a 'active' B12 test, which again is more accurate.

I am pleased to see that your GP has made a good referral to the right clinic, and you will also need a little bit of time to recover and also gain the right information before launching ahead again. There are also bereavement counselling organisations out there for women who have had miscarriages. Let us know if we can help further. Best wishes. MaryF

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Hollyhughes
Hollyhughes
in reply to MaryF

Thanks so much Mary, really useful. Yep I’m in in London.

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HollyHeski
HollyHeskiAdministrator

Hi and welcome. I am so sorry for your losses, nothing anyone can say can expresses how you and your husband must be feeling.

Many on here will have empathy with you and will share their experiences and give you support.

Give yourself time to grieve and build up strength.

So glad you will be referred to a Hughes/specialist.

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Hollyhughes

Thank you Holly, much appreciated

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StickyBloodMentor
StickyBloodMentorAdministrator

Hi Holly - so very sorry for your losses, please try and remain positive. Im not going to repeat whats already been said except that when you are ready to move forward its important that you are cared for by a specialist who understands our condition - not just for pregnancy but afterwards too.

Being in London you have the best choice for specialists but one that has an excellent reputation which Ive heard mentioned on here is Mr Rajrai. His details are here:

rajrai.info/

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Wittycjt

I had a peek for curiosity he sounds great! Good wishes Holly😄

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Hollyhughes

Thank you. He’s been mentioned a few times so will definitely have a look.

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Penelope-Mary

Hi Hollyhughes, you’ve had a rough time, my heart goes out to you.

I have APS ( and lupus ) undiagnosed at the time of my childbearing days and like you had several 8-10 losses (and 2 x loss of a twin in the second trimester) ,but we have 4 adult children.

I believe you are in the best place for advice ,in London , I am on the other side of the world ( 🙃) so can’t really add anything but support, on this terrific forum.

Knowing that genetically all is fine is terrific. Seek advice from the recurrent loss clinic and all the very best 🤞🏼🤞🏼

PM

🐳

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Hollyhughes

Gosh That must have been so hard! Im finding it difficult with 3 losses - how did you cope with that number of losses? I love my son & husband very much but I desperately want a second child to complete our family. Would have liked more (I’m one of three & v close to my siblings) but don’t think, should we be lucky enough to have a second, I could then face the stress of going through it again for a third x

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Penelope-Mary

You’ll feel stronger soon , you’ve only just had the D&C and your hormones are all awry. Once you’ve been seen by the recurrent loss team you’ll have a clearer perspective on your chances and be able to decide.

Lulutopical’s experience is encouraging.

I feel for you enormously, and do believe science will be able to help you. Don’t put too much pressure onto yourself re lifestyle; I know you want to do something , anything to help, but stress is one big factor.

Stay strong; we are all cheering for you.

PM

🐳

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Hollyhughes

Thank you. It’s really helped being on here and talking to people who understand.

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Penelope-Mary

It does help to chat doesn’t it Holly. It’s been so tough for you, and so many here truly understand.

Gentle hugs

Penelope

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Lauren2121

So sorry for your losses. Naava Carman is an acupuncturist who specializes in reproductive immunology in London. I highly recommend her - she knows her stuff. On her protocol I’ve got my antibodies down and am feeling better than ever. There are Facebook groups for reproductive immunology as well - so many knowledgeable and inspirational women on there. I think for diet, eating as organic as possible and avoiding any triggers. Gluten and dairy seem to be the big ones, but you might get an igg test to rule out other triggers. Also reducing inflammation as much as possible by cleaning up cosmetics, cleaning agents, environmental toxins, getting rid of plastics, drinking only properly filtered water, etc. Natural-fertility-info.com is a great resource for cleaning up diet, lifestyle. Environmental working group is another (ewg.org). Lastly, systemic enzymes can be supportive. Wishing you all the best. I’m hoping for my rainbow, too - in a similar situation as you. 💛

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Hollyhughes

This is all great information- thanks Lauren. I will have a look into everything you have suggested. Same to you - what stage are you at? I think I’ll take 3 months to recover, have further tests done & see what the results are and start working on getting my body (and mind) and environment into optimum shape and then hopefully we can start ttc again. X

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Lauren2121

I’ve been tta (trying to avoid) for about 6 months now while I work on continued balance/health and finish up Naava’s protocol. After my D&C I got a blood clot in my uterus; my body was trying to have its first normal cycle and I had to go in for a second procedure. It was all very traumatic - especially bc I had to try to convince my doctors of what was happening, and it took multiple visits to the ER to get them to help me. Even when the doctor removed the clot from my womb, which my husband, my mother and I all saw with our own eyes, he still denied its existence. Sometimes they can be so arrogant. After that, even though I had asked prior to my pregnancy to test for APS, at that point I demanded it. I bled for two months after my second procedure, and then gave myself a month after I began cycling to begin ttc again. I had one cycle ttc and used a prophylactic dose of lovenox, but my intuition said it wasn’t enough, that I needed additional immune support. That’s where Naava and a good reproductive immunologist comes in. They told me to stop bc risk of the same outcome was high until I fixed the problems. I read Alan Beer’s book: Is Your Body Baby Friendly? and confirmed again I needed more support. Which leads me to another option: if you want a baby soon, consider consulting with Dr. Braverman in New York. He is the man for doing what’s needed. He’s expensive... but he makes it happen! Baby dust to you! 🌼

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Hollyhughes

Sounds like you’ve been through hell. I think intuitively I’m in the same boat and need to spend some months on building my immune system up before we ttc (not actually had that convo with hubby yet - not sure he’ll be keen after the last 3 losses) I think I probably need to work on the emotional side too and start addressing my anxieties. I’ve just started reading Alan Beers book so will make some decisions and start looking into everything that has been recommended once I’ve finished it. Thank you so much. X

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Lauren2121

Sounds like you’re on a good path! EMDR really helped me with the trauma of the losses, too. Emotional health helps reduce the inflammation, too, I think. 💕

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Hollyhughes

Hi Lauren

I hope you are well today. I’ve looked into Naava, there is a 5-6 month wait to see her although you can consult with therapists that have been trained by her. How long did she recommend you avoid ttc whilst following her protocol? How frequently do you have acupuncture as part of that? Are you on any specific herbs? I see my current acupuncturist x2 a month and am on tang kuei peony. She’s also recommended starting to take women’s treasure. Half way through the book now and starting to look into all the reproductive immunologist recommendations too. Thank you x

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Lauren2121

I don’t see Naava directly. I see an acupuncturist in my local area who is being guided by Naava’s treatment plan. I would trust an acupuncturist who’s been trained by Naava. You could also get on her waiting list and begin with one of her trainees until you can see her directly. I’m not an expert in this area - but I do know that some fertility herbs are really not recommended for those with APS when ttc, and I’ve learned can make the whole situation worse. The plan that I’m on is a 5 phase plan - there are different herbal formulae for each phase. The first 4 are active treatment and the 5th is for maintenance. I’ve been on the plan since August and am just about to move on to the maintenance plan, which is when you can begin ttc again. I meet with my acupuncturist once per week, sometimes every other week if I can’t fit it in. Naava has also recommended that I meet with a functional medicine fertility specialist for functional testing, diet and supplement support, and a reproductive immunologist to test NKs and get a bit of immune support with lovenox, possibly a small dose of prednisone when ttc. Ivig has also been discussed, but right now I’m just taking igg supplements orally. Apparently intralipids are no longer recommended. Hope you’re doing well, too! I’m excited for you - I wish I were in the UK and could see her or one of her trainees directly!

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Hollyhughes

Hi Lauren

I hope you’ve had a good week. I’ve been in touch with Naava, who has been immensely helpful and has referred me to a therapist she has trained to establish a treatment plan for me. (Thank you for pointing me her way) Naava has a long waiting list as you know, but luckily I can still consult with her once a month with regard to herbs whilst I see her recommended therapist. Were igg supps recommended as part of your protocol or something you were already on? Thank you for all your help/advice x

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Lauren2121

Hello! All is well here and hope the same for you! I’m so glad you’re finding support with Naava and her colleagues. The igg supps were recommended by the nutritional specialist who I was referred to by Naava. Her name is Gina Gomez and she is located in Colorado. She also has a very long waitlist but is helpful with diet and supplements. If I were in London I would check out Angela Heap though. She is great! The only time I was ever “clinically” pregnant (I suspect very early chemicals/implantation failure many, many times) was on Angela’s protocol.

Anyway, Dr. Gomez recommended some iga powders, and then I did some more research bc I’m very sensitive to cow dairy. My RI recommended igg patches and I still didn’t feel comfortable as my skin breaks out when I touch certain allergens. So after some research and more support from a woman named Angela Griffiths who is also amazing (she runs the MTHFR a1298c Facebook page), I found the only dairy free igg product (if you want the brand lmk and I’ll send it to you). It’s supposed to do the same work as ivig, but obviously less intense bc it’s going through the GI tract and it’s an animal product as opposed to human blood. I’ve done a lot of work to improve the quality of my gut and I think the igg is actually supposed to help heal the gut, too. So I feel good about it!

I’m so excited for you and wishing you the best of luck in your healing and balancing process!

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Ayooshi
Ayooshi
in reply to Lauren2121

Hello lauren can I ask please what kind of things are on the protocol? Is it certain specific herbs?

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Lauren2121
Lauren2121
in reply to Ayooshi

I believe it’s individualized for your needs. I’ve been on six different formulae prescribed by Naava.

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missshelby

So sorry for your loss Holly, can't imagine what you're going through :(

I wondered if you had been tested for any other immunological issues? And in particular for High Killer Cells?

Dr Shehata specialises in Miscarriages and as you're in London might be worth a visit. His website is: miscarriageclinic.co.uk/ (It's in Epsom).

I've been treated there for both APS and High Killer Cells. So been on the same meds as you but also steroids and intralipids which suppress the killer cells and stop them attacking the baby in the early stages. It's not something many NHS hospitals look into but he's been treating women for years and has a very high success rate.

Good to rule this out if not, but if you have high killer cells the treatment is fairly straightforward. Hope this helps and that you don't have to go through any more heartache xxx

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Hollyhughes

Hiya, Thank you. I’ve read about natural killer cells but not been tested as all testing has currently been through the NHS. Can NKC develop after a healthy pregnancy? Or do you always have them? I think it would be worth getting tested privately and ruling it out (or in) as you say. I take it you’ve had successful pregnancies on this treatment? Thanks again, I’ll look at the website today xx

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Lauren2121

re NKs, it’s advisable to test them preconception, which will guide what’s needed rx-wise, and then again when pregnant, can adjust meds as needed. For me, in the US, it was an out of pocket expense.

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missshelby

The NHS do do the tests but only at certain hospitals so you could inquire at yours. Most private clinics do the test. I emailed lots of them to get prices and the cheapest I found was £400 for it, so its not cheap! (https://newlifeclinic.org.uk/), some places charge as much as £800. This is partly why the NHS is reluctant to do it I presume.

I'm currently 17 weeks and so far all looks good! We had my test results back days before we found out we were pregnant so were able to start the treatment straight away. I have a friend who also has high killer cells and after 3 miscarriages she's now got a healthly 3 month old from being on the treatment. xx

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missshelby

And I understand that high killer cells can develop after a healthy pregnancy yes, I think that's why some people are able to have one child and then struggle to have another. I haven't done much research into that side of things though.

This book is really worth a read and should have lots of answers for you: amazon.co.uk/Your-Body-Baby...

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Hollyhughes

Thanks so much - this is really helpful and helps me to see there is light at the end of the tunnel. So glad to hear your pregnancy is progressing well, I’ll see if I can get the test on the nhs, if not I’ll go private. I’ve got this book (arrived yesterday) and I’m looking forward to reading it. I’ve also just come across an article that suggests IVIg treatment for APS in pregnancy is beneficial so will raise this at my next appointment academic.oup.com/rheumatolo...

Xx

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missshelby

No worries at all, it's so hard when you don't know why things are happening and seems so overwhelming when you don't know how to start getting help. There are definitely people who can help though and I think trying to work out why it's happening so you can get on the right meds next time is key.

There is definitely light at the end of the tunnel. Some of the women he treated had had 20 (!) miscarriages before they started his treatment and then went on to have a successful pregnancy!

Dr Shehata is mentioned in Dr Beer's book so we're really lucky he's so accessible to London. He knows his stuff and has had lots of experience with it.

If you can get the tests on the NHS and take the results to him then that will save you a load of money, so definitely worth pushing for it!

Any questions just ask xx

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Hollyhughes

Thank you so much for all your advice and support. That’s definitely encouraging to hear. Has helped me massively in what has been a very tough week. Will attempt to get testing done on nhs first xx

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missshelby

Good luck and just ask if any questions xxx

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Lulutopical

I'm so sorry for your losses, Holly Hughes. There is hope, and 38 isn't too late for you to get your much wanted second baby.

I have written a rather enormous reply, I hope it helps in some way during this difficult time.

I am in Australia, so I can't help with nhs advice. However, I am currently holding my precious, lovely baby daughter, who is the result of my ninth pregnancy and is my second child.

I also have an 8 year old son who I had with no problems after an early miscarriage.

So, 7 miscarriages, 6 of them between the two successful pregnancies.

I went to a recurrent miscarriage clinic in 2015 which meant my husband and I had full DNA testing and were found to be 'normal'. We had no structural or hormone issues. This was really pivotal for me because it changed my mindset from believing it was natural selection. I found the process itself really awful but I'm glad we did it.

Despite my anticardiolipin antibodies of 20 and 25 and an ANA of 1:2560, we were diagnosed with 'unexplained infertility' and sent on our way.

In late 2017 I found I was pregnant and chose an obstetrician specialising in recurrent miscarriage. He saw me at 6 weeks gestation and using the results from the 2015 tests diagnosed APS. I was prescribed 100mg aspirin and 40mg clexane, 5mg folate and 200mg progesterone pessaries. Unfortunately at 7 weeks we found it was yet another loss.

3 months later, after my husband and I decided to call it a day on more children, I found I was pregnant again. It wasn't quite two weeks from conception yet and I immediately started clexane injections from the leftovers of the previous pregnancy. I believe this very early clexane was necessary and the reason she survived. I had remained on aspirin for my general health.

I also was very strictly gluten free. I avoided stress and uv light. I drank daily kombucha and took a probiotic capsule religiously. I rested a lot. I had weekly ultrasounds at my Obstetric appointments. They were so frequent so I didn't worry. I did not socialise and was very boring.

I honestly had very little hope that I was going to end up with a live baby. Even in the third trimester I struggled to buy the car seats because I thought it would be a waste if the baby didn't make it. It is very tough psychologically to get through a pregnancy brimming with positivity and hope when you have had recurrent losses. But all of that disappears when the baby is finally here.

Stay hopeful. There is hope.

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Hollyhughes

Hi Lulutopical, thank you for sharing your story with me. It’s encouraging to hear a positive outcome and am so glad to hear you have your baby girl after going through so much stress and trauma.

I had fertility tests before my son but am hoping that once I’m referrerd/go to a recurrent miscarriage clinic I’ll be given full tests - as you say - more for reassurance and change of mindset. I’ll also request testing for natural killer cells as I haven’t been tested for that yet. I think my hubby might struggle with active ttc after all this so I think I will spend the next few months building my immune system up and getting my body/mind/environment into the best shape, consult with specialists and get tests done in the meantime then if it happens I will hopefully be in the best position to support it (I still have lots of clexane so could start straight away too) I’ll stay on the baby aspirin as well. The physiological side is hard isn’t it - with this last one I just couldn’t visualise the baby in my arms because of the previous losses - I then for a second blamed myself for thinking I was going to lose it as why I lost it - I was thinking it so it happened- silly really - I think I’ll need to get some counselling/support to overcome my anxieties around this and to help cope with the stress. Thank you again, it gives me so much hope that my dream of a second child will one day be realised x

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Lulutopical

Best of luck Holly Hughes.

I forgot to add the other thing I did in terms of diet was bone broth every week. If you are an omnivore, I recommend this for gut health. We just roasted an organic chook once a week, had it for dinner, then placed the carcass in a ceramic and glass slow cooker (the basic cheaper variety in other words) with filtered water, one length of spring onion and 6-10 black peppercorns. 24 hours later you have organic bone broth. You can make soup or risotto from that for that night's meal. It is so easy.

Everything we usually eat is very natural without additives and usually organic. I think it helps to avoid chemicals if you can. Good luck and best wishes during your recovery and grieving.

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Hollyhughes

I did this last week and froze the left over broth - thanks for the tip ☺️ Will do this now whenever we have a roast x

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RxMe

Hi Hollyhughes,

So very sorry for your losses! I had had 2 successful pregnancies, later followed by 3 miscarriages, all before 12 weeks. The last unsuccessful pregnancy went to 11 1/2 weeks, and the doctor shook my hand just a day before the miscarriage as he thought I was home free. The lab was able to perform a genetic test on that one, and it did turn out to be Down's Syndrome (I was 40 at the time).

Following that, I struggled mightily with infertility, and eventually found my way to a doctor who specialized in diagnosing causes of recurrent miscarriage. He found a borderline reading for anticardiolipin antibody and I was put on baby aspirin. I still was unable to achieve a pregnancy, and did just about everything under the sun to have another child: acupuncture, massage, vegetarian diet, herbal supplements, fertility support groups, working with a fertility doc, and convincing my husband get a fertility work-up (it turned out that he too had issues at that point!).

I was extremely lucky to have had insurance at the time that paid for a single G.I.F.T. procedure. I continued on the baby aspirin and supplemented with progesterone. Against all odds, I became pregnant at the age of 42, the oldest one in my cohort! My wonderful son was born 21 years ago, when I was 43 years of age!

Since that time, I have been diagnosed with CTD (RA/possibly lupus). My rheumy is of the opinion that doctors don't have a truly precise understanding of how and which antibodies may affect a pregnancy, and she feels that my autoimmune issues were likely at fault back then.

Suffice it to say, there is hope, but you must be diligent, leave no stone unturned, and get thee to a physician who not only specializes in pregnancy loss, but preferably one who is caring and up-to-date on the latest therapies. Find a local support group if you can. It really helps with the horrible stress levels and roller coaster emotions of achieving and maintaining a pregnancy.

Much luck, hugs, and take care!

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Hollyhughes
Hollyhughes
in reply to RxMe

Thank you so much for sharing your story. It’s so encouraging and gives me hope. At my advancing maternal age it’s also nice to hear a successful story from someone who has been through similar with the same type of health conditions that I have that had a healthy baby in their 40’s too. I fell quickly with the last 3 pregnancies but am going to request fertility tests now all the same. X

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jetjetjet

Hi and so sorry to hear what you have been thru - As one of the few male's on here WELCOME C & J from New Hampshire USA

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Hollyhughes

Thank you, am glad to be here.

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Rebecca_H

Hi Holly,

So sorry for all your losses, you've had a great number of responses and I haven't read them so sorry if I'm repeating but I was at St Thomas's last week and saw a poster on the wall they are doing a study on hydroxychloroquine with APS patients. I have APS diagnosed after a 2nd trimester late loss in 2011. I had 2 successful pregnancies in 2012 and 2015. I'm pregnant with my third now after an early miscarriage 9weeks last February. I tried steroids for 8 months in total but I didn't get on with them (or pregnant again on them after the m/c) so I was put on hydroxychloroquine in Sept told not to try for 2 months and then we got pregnant first time on that drug. It is prescribed to lupus patients and if your antibodies are high then maybe its worth getting referred and asking to try. Dr Shehata (nhs Epsom and St Helier or private) is amazing and APS specialist at St Thomas's.

Best of luck, don't give up! X

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Rebecca_H
Rebecca_H
in reply to Rebecca_H

I don't have lupus by the way, just APS

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Hollyhughes

Hi Rebecca, apologies for the delay in replying. Thank you for the information - that’s really interesting- I will see if it’s possible to be referred to the study. Did they put on you on it via nhs or is it only private? I’m going to get some private reproductive immunology testing done too to see if I have any other underlying autoimmune issues in addition to APS - Dr Shehata has been mentioned a few times so definitely my first port of call. Congratulations on your pregnancy - it helps me massively to hear positive outcomes and know that all is not lost and I shouldn’t give up hope x

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