Antiphospholipid Syndrome, anyone?

Albah

So I got a call from the RE that my thrombophilia panel didn't come back normal and he is referring me to see a hematologist. I know a bit about Antiphospholipid Syndrome (APS) since I studied it in med school but my labs are not really classic for the diagnosis.

My Antiphosphatidylserine IgM was slightly high at 27 (norm is 0-25) and my Beta-2 Glycoprotein 1 Ab, IgA was 54 (norm is 0-20). Everything else was normal. 

I already spoke to a hematology colleague and he gave me his interpretation/thought but I will be seeing the hematologist my RE is referring me to in a couple of weeks to come up with the next step and plan. 

I realize this may be a bit out there for this board but there really isn't much out there on the internet and I was wondering if anyone has APS and has any input on their experience with being diagnosed and their treatment?  Thanks! 

Smash2009

One of my best friends has this (I wish I knew more about her specific numbers). Basically, she had FOUR miscarriages before her brilliant doctor did any testing....turns out, this is what she had. They put her on heparin shots during her next pregnancy, and she now has a healthy little girl.

They tested me for this after my second loss...my doc said it's pretty common and it is usually a pretty easy fix as far as pregnancy goes. There can be some other health side-effects, I believe, but from what I've read they are manageable. Keep us posted!!

Pamela05

This is what my original OB thought I might have.  Like you, my labs were "off", but not classic for APS.  Talking with other doctors, there are hundreds of clotting disorders out there, but only a handful are easily classified/identified like APS.  Many of the others may benefit from the same type of treatments though.  You can ask for extra testing, and may want to consider testing after you're pregnant as well.  Personally, it took so long to identify what's "wrong" with me because it only shows while I'm pregnant where the normal testing protocol is to test while not pregnant because pregnancy is supposed to change certain levels outside of the normal non-pregnant range. 

Albah

Smash2009:

One of my best friends has this (I wish I knew more about her specific numbers). Basically, she had FOUR miscarriages before her brilliant doctor did any testing....turns out, this is what she had. They put her on heparin shots during her next pregnancy, and she now has a healthy little girl.

They tested me for this after my second loss...my doc said it's pretty common and it is usually a pretty easy fix as far as pregnancy goes. There can be some other health side-effects, I believe, but from what I've read they are manageable. Keep us posted!!

 

Thank you for your story! Unfortunately I will definitely keep you posted once we have some more information.   

Albah

Pamela05:

This is what my original OB thought I might have.  Like you, my labs were "off", but not classic for APS.  Talking with other doctors, there are hundreds of clotting disorders out there, but only a handful are easily classified/identified like APS.  Many of the others may benefit from the same type of treatments though.  You can ask for extra testing, and may want to consider testing after you're pregnant as well.  Personally, it took so long to identify what's "wrong" with me because it only shows while I'm pregnant where the normal testing protocol is to test while not pregnant because pregnancy is supposed to change certain levels outside of the normal non-pregnant range. 

 

Thank you for sharing your story. Do you mind me asking what they diagnosed you with? I'll PM you...  

killian09

I just had a workup for APS after moderately elevated IgM.  The key thing for diagnosing APS is that you need to repeat the blood work at least 12 weeks apart. A lot of people have temporary elevations in either IgM or IgA (or both)--and that doesn't mean that all those people have APS--and so the diagnosis requires both sustained high levels and a history of unexplained miscarriage (or other other blood clot event--like deep vein thrombosis).

 The treatment is usually daily injections during pregnancy with a blood thinner (lovenox or heparin), but sometimes docs will prescribe baby aspirin in addition or instead of that.  

My doctor said that she would refer me to a hematologist AND a high-risk maternal fetal medicine OB  to make a plan, and she wanted me to TTA until that time.  However, because diagnosis really requires sustained elevation in these levels, she waited for repeat testing before making the referrals.  We did talk to one MFM in the mean time, and he said he typically recommended treatment if the levels (for either IgM or IgA) were above 40.  At 30-40, he had a discussion about it, but his recommendation was less clear-cut.

The good news about APS is that there are treatments that can help (blood thinners).  The bad news is that it can cause higher complication rates all throughout pregnancy (not just miscarriages).  But, the rates of late-term complications (e.g. preeclampsia, preterm labor) are still very low--just higher than the rest of the population.

((hugs)).  I found this really scary, but I hope you get some helpful answers soon.  I just had repeat bloodwork at 6 weeks from the first test and my levels seem to be trending back towards the normal range, so we are off the TTA bench now, but we'll re-test at 12 weeks if I'm not pregnant to get a final picture on this diagnosis. 

Albah

killian09:

I just had a workup for APS after moderately elevated IgM.  The key thing for diagnosing APS is that you need to repeat the blood work at least 12 weeks apart. A lot of people have temporary elevations in either IgM or IgA (or both)--and that doesn't mean that all those people have APS--and so the diagnosis requires both sustained high levels and a history of unexplained miscarriage (or other other blood clot event--like deep vein thrombosis).

 The treatment is usually daily injections during pregnancy with a blood thinner (lovenox or heparin), but sometimes docs will prescribe baby aspirin in addition or instead of that.  

My doctor said that she would refer me to a hematologist AND a high-risk maternal fetal medicine OB  to make a plan, and she wanted me to TTA until that time.  However, because diagnosis really requires sustained elevation in these levels, she waited for repeat testing before making the referrals.  We did talk to one MFM in the mean time, and he said he typically recommended treatment if the levels (for either IgM or IgA) were above 40.  At 30-40, he had a discussion about it, but his recommendation was less clear-cut.

The good news about APS is that there are treatments that can help (blood thinners).  The bad news is that it can cause higher complication rates all throughout pregnancy (not just miscarriages).  But, the rates of late-term complications (e.g. preeclampsia, preterm labor) are still very low--just higher than the rest of the population.

((hugs)).  I found this really scary, but I hope you get some helpful answers soon.  I just had repeat bloodwork at 6 weeks from the first test and my levels seem to be trending back towards the normal range, so we are off the TTA bench now, but we'll re-test at 12 weeks if I'm not pregnant to get a final picture on this diagnosis. 

 

Thanks for your input and for being so detailed. The health implications are very scary, and the possibility of needing anticoagulation freaked me out as well as it is not side-effect free.On top of that, I'm allergic to aspirin so if need be, I would probably need plavix.  I have a couple of questions for you if you don't mind.

- Did they start you on a baby aspirin a day while TTC with your current levels "just in case"? 

- How soon after your miscarriage did you do your 1st labs for the APS workup? I'm concerned that maybe I did them too soon. My HCG level was in the negative range already but it was around 3 weeks after my miscarriage was diagnosed.  I've read in a couple of places that perhaps these labs should be done 6 weeks after HCG levels normalize. 

I'm glad your levels are trending down and that you've been cleared for TTC! Thank you so much for your story!  

killian09

Albah:

- Did they start you on a baby aspirin a day while TTC with your current levels "just in case"? 

- How soon after your miscarriage did you do your 1st labs for the APS workup? I'm concerned that maybe I did them too soon. My HCG level was in the negative range already but it was around 3 weeks after my miscarriage was diagnosed.  I've read in a couple of places that perhaps these labs should be done 6 weeks after HCG levels normalize. 

I'm glad your levels are trending down and that you've been cleared for TTC! Thank you so much for your story!  

No, I'm not on baby aspirin just in case.  My doctors don't prescribe baby aspirin without a diagnosis, since it is not without risks. My impression from reading this board is that not all doctors feel the same way about this, since I've seen women get BA from their OBs after two m/c's but without a diagnosis of a clotting disorder. 

Despite that, I feel comfortable with my doctors' thinking on this, i.e. I don't want to be prescribed a drug just so I can feel like we "did something" if the doc doesn't have a concrete reason to think it will help. (I'm under the care of an MFM and a regular OB at Mass General, and we periodically consult a third MFM since my DH works with him occasionally and he always asks how things are going for us.)

I read a clinical practice overview on recurrent miscarriage in NEJM which reinforced my thinking that clamoring for BA probably wouldn't help (w/o a diagnosis of APS), quoted below:

"For women with unexplained recurrent miscarriage, it has become common practice to provide empirical treatment with low-dose aspirin, prophylactic doses of low-molecular-weight heparin, or both. However, two recent controlled, randomized trials involving women with unexplained recurrent miscarriage showed no improvement in live-birth rates with the use of low-dose aspirin alone or low-molecular-weight heparin and low-dose aspirin.Thus, this approach is not recommended outside of clinical trials."

See here for details or to read more and track down the citations for those studies:

https://www.cogonline.com/File/20110402/20110402155954338.pdf

My first blood test was about 1 month from when my HCG hit zero.  My OB did say that she thought the elevation may be related to the pregnancy, and that it is trending down now that I am not pregnant.  You're right that it is non-pregnant levels that are used to diagnose this condition, which is partly why the waiting 12 weeks to retest is so important.  

 I was impatient with the 12 week waiting period, so I requested a test after 6 weeks.  My levels are still above the reference range for IgM, but not by very much, and my doctor felt comfortable clearing us to TTC.  Also, my levels are below where the MFM we consulted would recommend treatment, so I felt there was no point in waiting bc even if they stay slightly elevated, there is nothing that we would do about it.

 I've got several more links to academic articles on APS. (I do health-related research for a living and my DH is a doctor, so between the two of us, we have a huge appetite for reading the primary literature ourselves.)  Let me know if you're looking for that kind of thing. 

Albah

killian09:

Albah:

- Did they start you on a baby aspirin a day while TTC with your current levels "just in case"? 

- How soon after your miscarriage did you do your 1st labs for the APS workup? I'm concerned that maybe I did them too soon. My HCG level was in the negative range already but it was around 3 weeks after my miscarriage was diagnosed.  I've read in a couple of places that perhaps these labs should be done 6 weeks after HCG levels normalize. 

I'm glad your levels are trending down and that you've been cleared for TTC! Thank you so much for your story!  

No, I'm not on baby aspirin just in case.  My doctors don't prescribe baby aspirin without a diagnosis, since it is not without risks. My impression from reading this board is that not all doctors feel the same way about this, since I've seen women get BA from their OBs after two m/c's but without a diagnosis of a clotting disorder. 

Despite that, I feel comfortable with my doctors' thinking on this, i.e. I don't want to be prescribed a drug just so I can feel like we "did something" if the doc doesn't have a concrete reason to think it will help. (I'm under the care of an MFM and a regular OB at Mass General, and we periodically consult a third MFM since my DH works with him occasionally and he always asks how things are going for us.)

I read a clinical practice overview on recurrent miscarriage in NEJM which reinforced my thinking that clamoring for BA probably wouldn't help (w/o a diagnosis of APS), quoted below:

"For women with unexplained recurrent miscarriage, it has become common practice to provide empirical treatment with low-dose aspirin, prophylactic doses of low-molecular-weight heparin, or both. However, two recent controlled, randomized trials involving women with unexplained recurrent miscarriage showed no improvement in live-birth rates with the use of low-dose aspirin alone or low-molecular-weight heparin and low-dose aspirin.Thus, this approach is not recommended outside of clinical trials."

See here for details or to read more and track down the citations for those studies:

https://www.cogonline.com/File/20110402/20110402155954338.pdf

My first blood test was about 1 month from when my HCG hit zero.  My OB did say that she thought the elevation may be related to the pregnancy, and that it is trending down now that I am not pregnant.  You're right that it is non-pregnant levels that are used to diagnose this condition, which is partly why the waiting 12 weeks to retest is so important.  

 I was impatient with the 12 week waiting period, so I requested a test after 6 weeks.  My levels are still above the reference range for IgM, but not by very much, and my doctor felt comfortable clearing us to TTC.  Also, my levels are below where the MFM we consulted would recommend treatment, so I felt there was no point in waiting bc even if they stay slightly elevated, there is nothing that we would do about it.

 I've got several more links to academic articles on APS. (I do health-related research for a living and my DH is a doctor, so between the two of us, we have a huge appetite for reading the primary literature ourselves.)  Let me know if you're looking for that kind of thing. 

I agree, I'm not a fan of taking a medication without a diagnosis. But being in that intermediate range, I was curious what your doctor's recommended. I really would not want to take any anti coagulation unless I really have to. 

I am also pretty impatient, especially after 2 losses, i just want to move on but haven't been able to. If it's not mentioned to me, i think I will request a 6 week blood draw as well. I'm hoping my issue is the same as yours and that my numbers come down. I just keep thinking the blood work was done too close to the miscarriage or maybe were affected by a pretty strong cold I had in mid may.

 I've had a hard time finding any articles about my situation. Everything talks about the regular criteria to diagnose APS and not the non-criteria antibodies and when to treat. I would really appreciate if you can share the resources you have found. I'm a family medicine physician so I too like to see the evidence out there. 

 

Thank you so much! And good luck with TTC!