New and a little scar(r)ed - I have APS and I'm going for an IUI in a little over 3 weeks...

New and a little scar(r)ed - I have APS and I'm going for an IUI in a little over 3 weeks...

Long story short: I had 14 miscarriages between 2000 and 2006. The 1st 11 were a combo of home tries and IUI's. Then, I did IVF twice, and an FET. Every single one lost to this horrid disorder. My APS was full blown back then. I was on the best treatment plan that existed at one of the best fertility centers in the country. The farthest I carried was 12 weeks with twin girls before I clotted at my placenta. I told my family of our long sought success, thinking we had won, only to bury them two weeks later. They were genetically perfect. It was, again, my fault they died. Eleven years later I still mourn them.

Fast forward to 2017, I'm back in the RE's office, 33 years old and emotionally ready to try again. They tested EVERYTHING. I even paid over $1250 to have my DNA and genetics examined. Green light from the RE.

My hematologist ran my panels, then ran them again 6 weeks later. Negative for APS. (WHAT?!?) Then he explained that APS is a transient disorder. It comes and goes when it wants and cares nothing for our plans and dreams. He gave me the green light for conception with the caveat that I return to his office for another panel as soon as I get my positive pregnancy test.

Then I met with an OBGYN MFM specialist who cares for high-risk patients. He also gave me the green light and said as long as I stay on low molecular weight heparin the whole time and only have ONE baby at a time, I should be fine. That complications normally arise AFTER the baby comes and you are no longer naturally immunosuppressed from the pregnancy. He says the plan is to have a vaginal delivery at 36-38 weeks to be safe and for ease of delivery. Then I get to stay for observation. There's a chance the kid gets discharged before me.

So, everything is scary and I just want someone to please tell me that they made it through the worst and came out healthy on the other side. Is anyone's circumstances similar to mine? Did anyone's APS rear it's UGLY HEAD during pregnancy or did the sleeping dragon stay slumbering?

I've read all the stories on here. Most are from 5+ years ago. I would really appreciate your stories and triumphs. I would appreciate a virtual hand hold and hug. I'm heading into the woods. I've got my map. I've got my plan. I hope we don't get lost...

~Rose

21 Replies

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  • Hello

    Welcome to the forum.

    I'm so sorry for all your losses and the years of heartbreak you have had. I've been there and know how you feel and I've come out the other side.

    I had Hughes / APS but didn't know it at the time. I had 3 miscarriages and wasn't tested. I then fell pregnant again but my darling daughter didn't grow well and was delivered at 29 weeks by emergency c-section. She did so well but caught an infection and died when she was 6 weeks old. I truly thought my life was over at that point.

    I still wasnt tested for anything! I was put on aspirin and a year later delivered a healthy baby girl followed by a son 2 years later also whilst taking aspirin.

    Three years later I found myself expecting again and was this time advised not to take aspirin. I went on to have a concealed placental abruption at 33 weeks. By a miracle we both survived.

    Five years later I got a spinal cord clot and had a few mini strokes - finally my condition was diagnosed.

    So you see I went through so much heartache as well but even without a diagnosis I managed to have 3 children. The fact they know what you have and will treat you and keep a watchful eye on you is great news.

    It's a scary time and you won't relax but please keep hope, it is possible to have a healthy baby with this condition.

    Sending you a massive virtual hug and lots of luck and baby dust.

    Kelly x

  • Thank you for your time and story. It means so much to me.

    Spinal cord clots! Mini-strokes! Are you doing well after all that?

    I'm so glad to hear you were able to have three beautiful children after such a heartbreaking loss. It's hard to be an invisible mother trying to mourn. No one really understands. No one really knows what to say. Life just drifts and carries you along a while, doesn't it?

    I feel like I'm in the best of hands, right now. I've got all the specialists in my pocket and everyone is confident that now is my time.

    Fingers crossed,

    Rose from Oregon

  • Thank you yes I'm so lucky to have my three children now but it was so hard getting there. I truly understand where you are at.

    I've had a tough time with my Hughes / APS and the spinal clot caused inflammation (transverse myelitis) which has left me with damage and chronic pain. My mini strokes have stopped now I'm on warfarin with a high inr level.

    Getting a diagnosis and finding the right dr is crucial.

    Keep us updated and good luck x

  • Welcome, where are you from? I had a tia with my one and only pregnancy and delivered early by emergency csection..5lb 6oz healthy boy. No one at that time told me of APS. Fast forward 28 yrs later. Hospitalized for stroke followed by other problems. Before the stroke had no problems except intermittent migraines. Its my understanding if you do the lovenox and aspirin you can have a safe and healthy pregnancy. But don't take my word as I haven't had this personal experience. I'm sure others on here will chime in, they will probably have experience with what you are inquiring about. Best of luck🙏🏻

  • Hi Witty,

    I'm from Portland, Oregon. I'm glad to hear that undiagnosed, you were still successful and have your son. The strokes I'm hearing of from several members are concerning. Are you taking anything now to prevent reoccurrence? My Dr.'s are confident that with the right cocktail of drugs, I'll be successful. I hope they're right.

    ~Rose

  • I'm taking warfarin now, may switch over to lovenox, I'm still trying to gain as much info as I can. As your finding out, " it's a difficult process!

  • I am gobsmacked when I read your story! I was undiagnosed when I had my 2 children but had a lot of trouble getting pregnant. IVF was relatively new when I had my kids but looking back on the tears with each -ve preg test is nothing compared to losing a much wanted pregnancy. You are a brave girl and I hope it all happens for you very soon!

  • Thank you for your kind words.

    Yaknow, it's odd. I never had any problem getting pregnant. It was keeping them growing. Over and over, I'd get a positive, then two-three weeks later, I'd lose them. The 11 pregnancies were over a span of 6 years. It sounds like a lot, but I took a few weeks to months between each miscarriage. They were emotionally and physically exhausting. I didn't really have the money at the time to seek help. I was so young - only in my 20's - and I thought it would just happen eventually.

    Once I did start seeing a specialist, the RE didn't think to test me for APS until after our 2nd successful IUI ended up at a 7 week loss. She was baffled. I'd have great HCG levels, even got a heartbeat on one, and then they were gone. She said I had less than a 1% chance of having the disorder. I think she thought I was exaggerating my history. She took me seriously after the results came back.

    ~Rose

  • I am so sorry for your losses it is truest heartbreaking but you are so strong to be able to try again.

    My APS seems to get worse while pregnant. I have tested positive when not pregnant but my levels increase during pregnancy.

    When they test your blood they only take a teaspoon so it is possible for them to not get any of the markers for APS even though you still have it.

    I had two miscarriages before being tested. Treated with 75mg aspirin and carried to 14 weeks. Then had a fourth miscarriage again on aspirin alone. I then paid for a TEG test which proved I needed 150mg aspirin and fragmin/levenox and I carried my daughter to term and had a healthy delivery. My daughter is now 2.5 and a joy.

    With no treatment you have about a 10% have of a live birth (I hate that terminology) with aspirin alone it increases to 40% however with the combination of aspirin and heparin it increases to 70-80% this was from a study on the BMJ website which I looked at every day whilst pregnant to try to calm my nerves.

    Sending you lots of positive thoughts and wishing you all the very best of luck and please keep us updated or PM if you need someone to talk to.

    Xx

  • Thank you for all the stats! Those are definitely some comforting percentages. What is the BMJ website you are referring to? I studied and worked in the medical field for a while ( just as a medical technologist - nothing glamorous ) and find studies very reassuring.

    I think I've found a great little community to help me through all this. Thank you for your support.

  • The BMJ is the Bristish Medical Journal and the link to the study I used is bmj.com/content/314/7076/253 there are some new studies on there too which you may find comforting

    Xx

  • Hi there and welcome, thank you for taking the trouble to write out your distressing history to date. You will find lots of support on here, including from other women in the USA who have been through very difficult times with this disease. I hope we can help you in some way, best wishes. MaryF

  • Thank you for the welcome, Mary. I've been contacted by several ladies already and am feeling very supported. I only wish I'd posted sooner and had all of you the last few months during all the testing and procedures.

    ~Rose

  • Hi and welcome.

    I endorse what my colleague, Mary, has said.

    Dave

  • Hello! Good news first! I felt better during my full term normal pregnancies which yielded two perfectly healthy children current ages 15 and 25) pregnancies. ( although I had yet to be diagnosed and had multiple first trimester pregnancies.) I was not treated at all- I had no idea why I miscarried so often. I'm grateful I miscarried in my first trimester. 12 weeks was the latest.

    My husband always commented.." you always seem to generally feel better when you are pregnant!

    I never knew why- now I do. Your body is naturally immune suppressed during pregnancy. Interesting. I will tell him what I have learned from you.

    I will say it is not correct when your doctor thrills you that you APS has " gone away". The anti bodies may fluctuate. Or like some else mentioned, the small amount of blood drawn may not have been enough to catch the antibodies, but once you have a APS, you will ALWAYS have APS, regardless of antibody fluctuations. Keep a tight eye on your doctors comprehensive understanding of this disease.

    Most of all- congratulations! I know it's difficult. But none the less, it does carry great hope! All the best, truly. Keep us all posted- we are in this together with you for 9 months!

  • Hi Kelly,

    Oh no, I think I was misunderstood. My hematologist did tell me it never goes away, just kind of fluctuates in intensity; comes and goes; sometimes so low it doesn't register. I'll always have APS. I'll most likely die of complications of this disorder. It's the reality of it.

    My OBGYN MFM said that if the mother can make it through the first trimester, and is on aspirin and low molecular weight heparin, then the outlook for the pregnancy is good. The mother is usually immunosuppressed naturally ( to keep the baby safe from her own immune system ). As soon as the baby is out, that goes away very quickly, the mother fades rapidly, and goes into distress. Without immunotherapy after birth, the chances of maternal fatality is a risk. He also warned me about the rare cases of catastrophic APS, but that since I'll be monitored so closely, the symptoms are easy to spot and they can act quickly.

    I'm glad to hear you felt better during pregnancy than any other time. I'm hoping its the same for me and I have the most splendid, life-changing experience.

    ~Rose

  • I probably read wrong! I feel you are in very good hands! I read above you are in Portland . Great system up there and OSHU always leading the way in many areas . Thank you for taking the time to put my mind at ease .

    My diagnosis is rather new for me ( certainly the horrors my body has endured are not) so I'm still learning a lot. I was diagnosed about four months ago after testing positive - then promptly clotted. Then antibodies went sero negative. This caused confusion for part ( not all) of my assembled team caring for me in San Antonio Texas, so I went to London to the London Lupus clinic ( where Professor Hughes is) for consultation. My consultation letter explained that is is common for APL antibodies to fluctuate with this disease. As you said, to be "transient." I believe the vocabulary used is going from "sero positive " to "sero negative."

    If my story helps others reading? Having the same brain damaging - unfortunately can be literal- battles with docs?

    I'm so glad to hear once you are past the first trimester you should be out of the woods.

    So proud of you! This certainly is not easy. Only mothers who have gone through this particular crazy maker of an ordeal can understand how it's possible to experience this level of intensity of fear, joy, and numbness all at the same time. Give your husband a high five from Texas!

    ( sorry I posted this in the wrong response box! Should have been one lower..)

  • Hello! I'm so sorry to read your post, what determination and resilience you have.

    I've had 6 miscarriages in the last 3 years, 3 chemicals, 2 ectopics and a missed miscarriage at 9wks.

    After my 3rd I was tested and it showed I had sticky blood syndrome. Was also diagnosed at the time with high NK cells (worth reading up on) and as a result they also found fluid in both my tubes, of which both had to be removed.

    Referred for ivf and currently in my 2ww on my 3rd attempt, the previous goes resulted in chemical pregnancies.

    I was out on steriods to fight the NK cells, and on first round was advised to take clexane from seeing a heartbeat at first scan, roughly 6wks, never got that far. Second round they told me to take clexane from day of transfer, that too resulted in a chemical. This time I've been given a stronger dose of clexane of which I started at day of transfer again. As much as I'm trying to stay positive, I'm losing hope fast, my embryo only made it to day3 this time as was the only one that fertilised (turns out there's been a issue with medication that my husbands been on that effects sperm quality) the embryo was only graded as average, got a week to go till test date, and I'm 39.

    As you, I will keep going until I can't and even then we have other plans to try.

    Wanting to wish you all the best for the future and I really hope you get the healthy baby of your own to make all of your journey worth while xx

  • I wish you all the best, too! I'll keep my fingers crossed for you. For comfort, a good friend of mine just had twins boys from IVF at 42. It can happen.

  • Thank you for sharing. So sorry to hear of your struggles. I hope it works out this time. My doctors are also advising that it's transient... no idea if thats accurate.

  • I believe when they say "transient" they mean this definition:

    Transient: a momentary variation in current, voltage, or frequency.

    According to my hematologist, APS varies in levels/saturation/intensity in our system. Some professionals believe it's influenced by lifestyle choices (diet, environment) and some believe that is woo-woo BS ( like my doctor - ha ).

    What I do know, is that in 2010, I tested for food/environmental allergies. I stopped using harmful chemicals. I drank more water and avoided food/products I was medically proven to be allergic ( aka: have an immune response ) to. I'd never felt better in my whole life after making those changes. I didn't realize how much pain I was in and how tired I was until I wasn't anymore. I would like to think that my healthy choices put my APS into hibernation. Maybe I'm delusional, but at least I'm healthier for it.

    ~Rose

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