New

Did you ever experience a blood clot due to this, Sandy?

Hey Danni,

First, I wanted to say sorry to hear about your possible diagnosis. But it's good that since you may have it that you've been diagnosed and you can now monitor and treat it.

I was diagnosed with APS over 15 years ago, after a major clot (DVT). The good news is that, until recently, I had no additional issues or symptoms over those 15 years. After some initial worry and a few common sense changes to my life style, it's something I really didn't even think about.

Recently my platelets dropped and I've been working with my doctors to figure out treatment options. I'm updating my thread shortly down in the APS folder if your interested.

Sandi is an awesome resource and can probably answer your questions, but I'll keep watch on your thread and see if I can add anything.

Mike

No, surprisingly I haven't had a clot up to this point. I actually had the antibodies back in 1982, but nobody knew what it meant back then. I developed ITP in 1998, Lupus in 2006, and tested positive for APS Antibodies in 2006. Prior to that, I kept asking my Hemo to test me but he refused because he said that people with APS tend to have mild ITP and my counts were too low. That theory turned out to be wrong.

There are three antibodies: Lupus Anticoagulant, Anticardiolipin Antibody and beta-2 glycoprotein. Within those antibodies, they are broken down even more to include the IgG, IgM and IgA's. I have the Anticardiolipin Antibody. The Lupus Anticoagulant is the worst - the clotting risk is highest with that one. Having that one or not having that one has nothing to do with a Lupus diagnosis.

I would try not to worry about it if I were you. I stressed myself out about it a lot and worried for nothing. It's been 8 1/2 years since I found out and I haven't had any problems because of it. Just be aware of warning signs and risks such as birth control. Some people never have any problems.

Here is a good overview.

www.nhlbi.nih.gov/health/health-topics/topics/aps/

Hey, there you are Mike! You are probably more of an expert than I am. I'll go and read your update.

Thanks for your response, Mike! It's good to know that there are also other people here who have it, too. I'm slowly starting to understand it all a bit better.... It was so weird though, when I was at the doctors office. Basically the last couple of years I'm always thinking about low platelets, bleeding issues and these sort of things and now it kinda shifted 180 degrees... I'm thankful, that I didn't have any bloodclots yet. I was freaking out a bit in the office though, because he told me that migraines can be amongst some symptoms....I'm glad I asked him if that meant, that my head was full of bloodclots but he said no and kinda explained it to me. You know, I'm german and sometimes I misunderstand things... Did you have any other symptoms though with the disorder? I feel I might have some... like my memory isn't quite as good anymore, etc....

Do you know why your platelets are falling? How do they manage that for you? Thank you so much for sharing with me!
greetings,
dannii

Hi Sandy, that's wonderful, that you never had a clot! I just went ahead and checked my print-outs the dr. gave me.... It says high for Phosphatid IgM. I checked for the other three things that you wrote about above , but it says normal there always.... i don't see through this quite yet. n=Next time he's gonna test
Antiphosphatidylserine antibodys (igA, IgG,IgM)
Beta 2-Glycoprotein antibodies (igG, IgA,IgM)
Cardiolipin Antibodies IgG, IgM
Diluted Russell Viper Venom Titer (DRVVT) W reflex to 1:1

I have no clue what it all means.....
especially the Viper thing

Danni:

I've never heard of Phosphatid IgM, couldn't even find it in a search. As for the others:

Antiphosphatidylserine antibodys (igA, IgG,IgM) - never heard of it
Beta 2-Glycoprotein antibodies (igG, IgA,IgM) - One of the APS Antibodies that I mentioned
Cardiolipin Antibodies IgG, IgM - one of the APS Antibodies that I mentioned
Diluted Russell Viper Venom Titer (DRVVT) W reflex to 1:1 - tests clotting time

Anti-Phosphatidyl Serine IgG/IgM is another APS thing.

See www.orgentec.com/index.php/en/produkte/elisa?cat=6%20&product=44

Thanks, Ann. I didn't look that one up.

Hey guys,

I don't know in a way what to think right now, maybe you guys can help me with this one...
I was eating some (gluten free, rock hard) salt pretzels today, and afterwards I noticed I have a blood blister from it on the inside of my cheek... I must have kinda injured the tissue there. Now, I've heard and read all those things about bloodblisters in the mouth, that I kinda freaked out. I'm taking my low dose Aspirin since my Hematologist kinda diagnosed me with APS (although 2. test to confirm after 12 weeks is still needed..) and am wondering now, is that because of the Aspirin, or did my Platetlets indeed drop, or is it a mixture of both..... No clue. So, I decided to mail my Hematologist ( he gave me his email to mail him if I had any bleeding symptoms). He is great and wrote me back pretty fast and said to stop taking the aspirin for a couple of daysand if it doesn't get better to come in for a blood test next week. If it gets worse over the weekend I should go to ER. I'm kinda freaked out... In a way, I could imagine that the Aspirin by itself could be capable of doing this, since I obviously injured myself with those pretzels.... but I don't have any clue. I 've never had this happen before, so i was wondering what you guys think..... My hematologist said that even though my platetlets showed to be 74 last time, they were indeed higher, around 120 in another test... so he thinks i don't have itp, since he knows the cause now (APS) ...

What do you guys think of this?

many greetings to you and thank you !

Is that the only symptom? No bruising or petechiae? If not, I'd try not to worry about it and just follow the doctors advice.

yeah that's the only thing... well i have two small bruises on my knees but got them a couple of days ago. No petechiae or other bleeding signs.....
This/these diseases are so spooky to me....