How to treat anticardiolipin antibodies during pg?

[baby-makes-3]

I am positive for anticardiolipin antibodies. I have some confusion about treating the IgM vs. IgG antibodies.

Today I had an appointment with a HR OB today who said that since my IgG was <6 and my IgM was the only thing elevated at 88 (IgA was also <6), that there is NO association between IgM anticardiolipin antibodies and pregnancy loss and that he would not recommend treatment with lovenox. He said that ONLY IgG anticardiolpin antibodies were associated with pregnancy loss as IgM antibodies do not affect the placental barrier (as IgG antibodies do).

My original labwork from Quest Diagnostics from 12/24/2008 (initial diagnosis) says at the bottom:

"Anti Cardiolipin Abs, IgM: The Antiphospholipid Antibody Symdrome (APS) is a clinical-pathologic correlation that includes a clinical event.....pregnancy loss.... and persistent positive Antiphospholipid Antibodies (IgM or IgG ACA >40 MPL/GPL, IgM or IgG anti-B2GPI antibodies, or a Lupus Anticoagulant....."

I also found this information, specifically question #46 on this link: http://www.apsfa.org/faq/faq5.htm

I will say that neither the rheumatologist nor the regular OB suggested that IgM was less problematic for pregnancies. In fact, the OB I had spoken to previously said he would put me on lovenox if I became pregnant.

Very generally speaking, on various forums, I see that often high IgM numbers are treated with 1xday baby aspirin, if not lovenox.

I know this is pretty complicated, but does anyone here have any info about these discrepancies??

[MidwifeErika]

My knowledge is a bit limitted as these things are WAY out of my scope. Is there another doctor you can talk with if you are uncomfortable with the treatment plan?

[MyFillingQuiver]

I'm not a birth professional, but a mama with a pos ANA, whose well-researched and self-treating regarding this issue.

I had a nightmare 1st pregnancy, where I was mistakenly diagnosed with lupus, due to early onset (and severe) pre-eclampsia with a positive ANA. I don't remember my number, but it was outrageously high at that point. I delivered at 34 weeks with skyrocketing BP, PROM, and had very heavy bleeding in the week PP.

FF a few years and it was confirmed I did not have lupus..got pregnant again. I developed a large subchorionic hemorrhage near the end of the 1st trimester and lost the baby. The OB I had during this loss was a RE, and suggested a baby aspirin a day. I began immediately while I consulted a naturopath.

Since that time, I've had 4 more healthy pregnancies (and I'm 22 weeks with our 6th child) with no indication of ANA issues or pre-e. The regimen that I have settled on since my loss, has been 1 81 mg aspirin per day, 1000 mg mercury free fish oil (blood flow, cardiovascular health and inflammation) and 1000 mg of quality vitamin C to reduce inflammation and ANA markers. I generally test negative, or have a very weakly positive ANA. My bleeding following delivery has always been normal, as well.

I take other supplements and eat healthfully, as well...but I think the combination of the three has really been the key for me. I used to have chronic inflammatory issues such as repeat UTI, and I haven't in years.

Anyway, sorry for the book, but I know how daunting this issue can be! I hope you find a treatment that works well for you!

[baby-makes-3]

So far, I've talked to 4 professionals (including my midwife) and have gotten basically three different opinions. I am interested in any and all experiences with this as it is just crazy how much conflicting information is out there regarding this issue.

MyFillingQuiver,

Thanks for your response! Were you ever tested for anticardiolipin (antiphospholipid) antibodies, and if so, which were positive if any ? I was positive for ANA a year ago, but for the last 6 months, I have been ANA negative. ANA and AcL often coexist together, but are different things. Since you were "diagnosed" with Lupus, I am assuming you were tested for the other antibodies?

Also, how did you decide on 1000 mg of fish oil? I was thinking that more would be possibly be appropriate. Currently I am taking 2000 mg/day, but am not pg yet.

Are you going to an OB or MW and if OB, did they ever suggest lovenox?

Thanks again

[MyFillingQuiver]

As far as the anticardiophospholipid, I'm not sure. It's been about 12.5 years since this was going on....I wouldn't doubt it if it was positive at that time.

When I first started fish oil, years ago, I took 3000 mg per day..since things have really calmed down, and I don't have any signs or issues, I reduced it. Some of the reasons I reduced the dose were because at times I also take EPO and flax seed...thereby getting lots of Omega's.

I have a midwife for the first time with this pregnancy. She is supportive of this route, and since this is my 5th pregnancy since I had issues, has no desire to monitor anything to a higher level-in my eyes and hers, it's virtually a non-issue. My four children prior were with 3 different OB's. The OB for our 2nd and 3rd children was the OB/RE who recommended the 81 mg aspirin. He was glad I was taking it, and supported my other supplements. My last couple of OB's pretty much took the "if it ain't broke" approach, and were fine with what I wanted to do-not like I'd change it if they weren't, since I believe it's the reason I've been testing negative or extremely weakly positive ever since.

In my first pregnancy the OB (the misdiagnose dude via military) had me on injectible heparin 2 x a day..which, you'd have a really hard time convincing me to do again in my situation! Lots of risks (heavy bleeding being one-which I experienced) and no anti-inflammatory properties that the aspirin, fish oil and vitamin C have! So...

Yes, I'd love to see other mama's with some experience chime in here. It's always good to hear other experiences and what is working for others.

I hope you are able to figure out what is best for you-it's hard with conflicting information! Obviously, OB"s are going to go the Rx route, and naturopath's and midwives are going to tend more towards natural treatments.

Best wishes to you!

[TonyaW]

Sorry OP, I don't know the answer to your question. However I sure do wonder if MyFillingQuiver knows about the anitbodies to beta2glycoprotiens 1 (IGA). All the reading and info I could find online does not support the IGA isotope as being part of the laboratory diagnosis criteria for antiphospholipid syndrome, but my doc says the the antibodies I do have put me at some risk for thrombosis while pregnant. So if ever get pregnant again (which I hope to) I wonder whether I should try to treat naturally like you or with Lovenox.

I never paid attention to the ACA antibodies other than seeing that they are included in the diagnostic criteria for APS. Op why were you doing the blood work? Have you had previous losses? If so, then I might seek the opinion of someone who isn't an OB and more experienced with this issue. I am considering doing that myself.

[baby-makes-3]

Thanks again. Good for you that you found a regimen that works well for you.

Tonya, I have also found that the IgA is not particularly associated with APS. In fact, what actually constitutes APS is pretty much up for grabs. I have read that you have to have AcL antibodies AND the lupus anticoagulant to have full-blown APS, but I have also read that just having the IgG or IgM antibodies means that you have the syndrome.

From everything that I have read, lovenox is pretty tame compared to heparin and is not as risky. Even on lovenox, the protocol is that you switch to heparin for the last few weeks since it has a shorter halflife and you cannot get an epi with lovenox. So if you go into labor on your own, the hep is out of your system more quickly.

This condition is pretty rare -- I think less than 2% of people have it, and then taking even fewer than that are TTC and you can see that the research is sketchy. There are some that say that these antibodies don't affect pg at all, but from what I've read, I believe that they do. I have had three losses myself and it may or may not have been related -- all were early losses.

I try to avoid pharmaceuticals at all costs and am not crazy about the lovenox route. But since the whole APA -pg connection is basically "new science", then any natural self-protocol would be a guessing game. How could you know if you were truly thinning your blood enough so as not to produce blood clots? Especially since pregnancy itself is a risk factor for clots. With lovenox, your levels are constantly monitored and adjusted accordingly. Since I have confirmed anticardiolipin antibodies, I am not comfortable going the natural route alone. My ideal protocol would be to combine this with my healthy lifestyle and accept that this may be one area where science is quite helpful.
I had my awesome natural birth with a midwife for my first pregnancy, and even in books like The Thinking Woman's Guide to a Better Birth, it is admitted that in certain circumstances, conventional medicine does help. It was hard, but I have accepted that this may be me.

Also, I have spoken to a rheumatologist about this issue, but I have noticed that when you mention pregnancy, most other professionals defer to the OB in charge. It's been my experience that they don't want any liability of going against what your OB says. I am awaiting more bw with this HR OB before deciding which way to go, or if I need to find another provider. PM me if you want -- I have a lot of links for this issue .

[MyFillingQuiver]

OP, you are totally correct that when you are pregnant, and you have an "issue", particularly one that can be fairly "hazy" to diagnose/treat, everyone bows to the OB as the final answer. In fact, I was put in a non-military hospital when I was first having issues, and had consults with a great rheumatologist, a nephrologist and an internal medicine doc. ALL THREE said that they did not find evidence that I had lupus. They all believed that I had an autoimmune response to the pregnancy, and that it triggered early onset pre-eclampsia. However, my OB was just totally convinced it was lupus, and did the whole, "Patients with lupus lose babies at a much higher rate-including second, third term and birth loss babies. So, we need to treat aggressively."

For him, the aggressive treatment meant 60 mg of prednisone per day, (which caused SO many other problems I can't even list here-but a few were Cushing's syndrome, over 100 lbs of weight gain on a small girl, hypercholesterolemia/hyperlipidemia, and severe gestational diabetes, requiring a 24hr insulin pump) and injectible heparin (which prevented me, a first time, scared, alone and sick mother from having an epidural in labor due to concerns of bleeding in the epidural space).

He never treated the actual issues, such as extremely high BP, and we were chasing so many issues from the heparin and the excessive prednisone. If you are thinking at all that you might want an epi in labor, please (please!) check that your form of medication (if you choose it) is not contraindicated for epi's. I had no options for pain control, and my BP was skyrocketing in labor so I was on seizure toxemia protocol-mag and no pain relief.

Anyway, I know it's just one person's crazy saga, but I always feel compelled to share it. Following the birth, I began a 12 month protocol of experimental cytoxan chemotherapy tx, where I was told I would never have children, and that this may not even save me. At month 10 in the protocol, I left the established medical care, being told by the Dr I'd be dead in a few months, and found a naturopath/DO to treat me.

To the other mama here, TonyaW, I am sorry but I know very little about your particular questions. I am very well researched in what I dealt with, and that filled up my head enough, LOL! I would think that many of the autoimmune/inflammatory markers behave similarly, and can be part of many different disease processes, OR can be part of NO disease process-as was mine. Mine was found through having another issue that was brought up through a reaction and then totally blown out of proportion. My OB consistently told every consulting Doc that I had "severe SLE" as if it had been diagnosed....so I know it is very tricky to nail these things down.

I pray the very best for you ladies. I know that many of these issues are just now being identified, let alone treated well..but there has got to be some experts out there who don't just refer back to the OB who knows about as much as us on the subject!

Edited to add that I'm very sorry for the losses suffered, no matter what the cause. However, I understand believing that something may be wrong that caused them, and what it feels like to want to fix it. Just know that there can be success with that quest. Blessings!

[Girlprof]

I just wanted to add that there is a long thread somewhere on Health and Healing about these issues and related ones. I was not diagnosed with APS but with something related called APe. I was seen by an OB, and then MWs, and also a rheumatologist. We made a very good team and they generally made it clear that I was actually the head of the team, that final decisions were mine to make.

A lot of these issues are understudied and good solid scientific answers are simply not available. The rheumatologist I saw did recommend Lovenox. He said they didn't really understand it, but Lovenox was "pregnancy enhancing" and seemed to help many women with previous losses. This is the route I went.

Note, I did not want to switch to heparin and I was able to avoid doing so. The heparin switch is not standard protocol outside of the US. I had hoped to go into labor naturally and simply stop the injections at that point. Having already had one child without pain meds, I was confident in my ability to do so again. Ultimately I had to be induced for other reasons, but I did to avoid the heparin switch.

There is a LOT more info on all of this - with some very helpful insights from outside the US - on that Health and Healing thread.

Best of luck!

[baby-makes-3]

We made a very good team and they generally made it clear that I was actually the head of the team, that final decisions were mine to make.

That sounds awesome - that's the way it should be .

Thanks -- do you have any idea what keywords would be used for searching H&H? There are so many possibilities, i.e., anticardiolipin antibodies, antiphospholipid antibodies/syndrome, clotting disorders, APA, APS, acL, Lovenox, etc. etc.

The possibilities are endless! Do you remember what might have been in the titles?

[enigo]

I am sooo happy I found this thread. After 3 mc I finally had some testing. All the results are not back but my anticardiolipins were at 14. I should know more after tomorrow's results are back.
I do not want to go the crazed medicated route, and am so happy to have found this thread, especially MyFillingQuiver's reply. These are all the things I had been concerned with. After all, I have one fabulous son, and I want to be in top condition. I am first and foremost his mother and I wouldn't want to do anything to my body that would compromise my future health and time I spend with him.

I want to go the natural route as much as possible, although I don't have an issue with aspirin, I would do that. I will up my fish oil. I take it now, but maybe only about 1000mg mixed with borage oil.

[baby-makes-3]

Enigo,

I too much prefer the natural route.

Just to make it clear, MyFillingQuiver is only sure that she was ANA positive, which is different from having anticardiolipin (aCL) antibodies. They sometimes present together, but are fundamentally different things. Even within the context of aCL antibodies, there is IgG (strongest connection to m/c), IgM (controversial connection) and IgA (generally considered not as strong a connection).

It's pretty complicated, and your numbers can vary depending on what test is used. You will also find wildly differing opinions on how to treat these antibodies, and I personally have not been able to find one single webpage that claims to have any information specifically on how to naturally treat anticardiolipin antibodies in pregnancy. The basic issue is to thin the blood to prevent the inflammatory response in implantation and to prevent clots later in the placenta.