Does Anti-phosphatidylserine = APS diagnosis?

[ChicagoCubs]

Hello!

I could really use some direction. (Located in US).

I tested positive - twice - for anti-phosphatidylserine IgM (32 and 53).

I tested negative for the three “standard” labs.

I had a knee to pelvis DVT two years ago. The hematologist at that time told me it was the Pill. She pulled all my labs and refused to test for underlying disorders, even after I asked multiple times.

I went for a second opinion with a new hematologist and this is where I am now. Even with the two positive labs, 12 weeks apart AND the history of DVT, he said he didn’t want to “label me” and just advised baby aspirin and to take Xarelto when I travel over 4 hours. Even that part is strange to me because there are studies saying that Xarelto is not effective with APS and I have never heard of only taking Xarelto on the day of travel. (I took Xarelto for 3 months post DVT, so I am familiar).

The hematologist just kept saying he didn’t want to put APS in my records and that it could possibly be an issue down the road for insurance, etc. Again, this doesn’t make sense to me because if I wanted to get additional life insurance, they would certainly find my positive labs in my health history!

I know phosphatidylserine antibodies is the “second tier” lab and it isn’t officially accepted in the diagnostic criteria ...but I have read that it SHOULD be included.

Is this something I should pursue with yet another hematologist or rheumatologist? I am not exactly thrilled with the idea of lifelong anticoagulants but I also don’t want to have a stroke, etc.

Thank you!!

[ChicagoCubs]

Anyone? Hellooooo?! Is anyone out there???

[Medically_confused]

I am new here and still learning but what I would suggest is you do some research. This website (aps-support.org.uk/about-aps) taught me a lot, it’s uk based so the specialist list won’t apply but you can at least find out about treatment etc. I do know that everyone should at least be on 75mg aspirin a day to avoid clots but it usually if someone has already had a clot they have something stronger than aspirin such as warfarin. This is about all I can say for sure until the more experienced people comment.

[ChicagoCubs in reply to Medically_confused]

Hello. Thank you for the reply and web resource. I will look. Yes- it’s odd because I had an event and tested positive twice - but only for the second tier lab. I just don’t want to get caught off guard and have even bigger issues.

[MaryF Administrator]

HI, I enclose this for you to read: ncbi.nlm.nih.gov/pubmed/252... Also our charity website, plus a useful paper: ghic.world/ the-rheumatologist.org/arti...

Best wishes. MaryF

[ChicagoCubs in reply to MaryF]

Hi Mary. I just read the article by Dr Hughes. Very informative.

[ChicagoCubs]

Hi Mary. Thank you for the insight on this. I am discovering the UK is much more advanced on this issue vs the US.

[Raw57]

I’m in the US and my hematologist group includes testing for the IGG, IGM and IGA anti-phosphatlipids, and the 3 standards lab for APS. They believe symptoms, clotting event or miscarriage along with positive results twice to any of these lab test twice make a diagnosis of APS. They do like to see results to be higher than just a bit over normal. Once this happens they do not test again. They prescribe treatment and if you are without issue they see you twice a year.

In my case in 2014 after a few upper extremity DVTs my lab results were on the low side of high so I was not prescribed any medication by the hematologist I saw at the time because my labs were low positive.

In 2018 a neurologist I saw for extreme headaches referred me back to the office because I had a positive lupus anticoagulant test and a highA/G ratio. The hematologist did the Antiphospholipid test again and it was very high, over 100 for the IGG and IGM. He did not test anything else. So he prescribed Xarelto for life. Once I started the Xarelto the daily headaches stopped. So despite being positive in 2014 it took 4 years to receive treatment. The 2nd hematologist I saw is a true hematologist and not an onocologist.

So what I’m saying is it is not unusual to not receive prescription anti coagulatantts with low positive results. Did your clot dissolve? Do you still have issues with it?

I still have my clots. Collateral veins have grown to carry the blood around the clot.

If you do not feel comfortable with this hematologist please seek a second opinion.

[ChicagoCubs in reply to Raw57]

Hello Raw57. Thank you so much for sharing your experience. I was very lucky and my clot completely resolved. That leg is a little larger than the other and it gets stiff when standing in one place too long or sitting too long but other than that, it’s good. I had a few headaches but once I started the daily aspirin I have had no issues. Yes- this is an hematologist/oncologist and i have wondered if perhaps a regular hematologist would be better. I think I may keep with this and if I start having symptoms of things like dizziness/headaches I will get a second opinion and also she a rheumatologist. Hope you are felling better. Thanks for sharing

[Lauren2121]

I’m in the same boat as you, with regard to labs. But I have never had a dvt, pe or another major clotting event; just recurrent pregnancy loss. I’m not on any prescribed thinners unless I’m pregnant or trying to conceive. I take nattokinase, serrapeptase, custom formulated Chinese herbs, and some other blood supporting supplements that my functional med doctor prescribed. I also try to stay active, hydrated, and have a really good self-care regimen. I go to acupuncture and chiropractic regularly. The hematologist said I don’t meet criteria despite three positive tests and many, many losses.

[ChicagoCubs in reply to Lauren2121]

Thank you Lauren. I am sorry about your pregnancy losses. What is crazy to me is that I had one pregnancy- our twins- born at 37 weeks and no issues. The only use was the massive DVT a few years ago. Yes - I see a huge difference if I don’t exercise!!!!! I will look into integrative doc as well. Thank you for sharing.