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Anyone also diagnosed with APS?

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14 years 6 months ago #13658 by jennaouellette
Anyone also diagnosed with APS? was created by jennaouellette
Hi there! My 18 year old sister had a DVT in her leg last May and now is believed to have Antiphospholipid Syndrome. The hema she saw recently found it very ironic that I was recently diagnosed with ITP as the two seem to go hand in hand quite often. (I was tested for the LA antibody and was neg). Just wondering how many fellow ITPers actually have APS as well, and if so, are you on life-long anticoags? I really hate the thought of my lil sister being on such harsh drugs for the rest of her life....
as always, thank you!
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 6 months ago - 14 years 6 months ago #13677 by Sandi
Replied by Sandi on topic Re: Anyone also diagnosed with APS?
I answered in another thread, but yes, I have the antibodies. I am only treating with daily aspirin for now since I have not had any clots. According to research, 33% of people with ITP also have APS, so I'm surprised there are not more of us here. I wonder if that is because so few people are really tested. I have been tested several times and sometimes I have the antibodies and sometimes I don't - they come and go. I practically had to beg to be tested initially. My hemo turned me down several times because he said my counts 'went too low to have APS'. Wrong! Finally, my Rheumatologist agreed to do it. I had the antibodies.

Were you also tested for Anticardiolipin and Glycoprotein? Those two are also APS antibodies as well as the VDRL.

I'm sorry that your sister is on blood thinners. That can be a difficult thing to manage.
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14 years 6 months ago #13687 by jennaouellette
Replied by jennaouellette on topic Re: Anyone also diagnosed with APS?
Thanks for your response Sandi! I also saw your response on the other post. I am not sure if I was also test for the two antibodies you mention. I know my hema did just about everything he could do knowing my sister's history, so I think he did but will double check next time I see him. They are doing the entire panel again on my sister so we will have those results in about 2 weeks (they are looking further into her positive proteins etc). Do you know of any forums for patients/families with APS? I would love for my sister to find a community as supportive as this one. Being so young and feeling so alone with this dx, I know it would do her good to talk with others who have had similar experiences.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 6 months ago #13722 by Sandi
Replied by Sandi on topic Re: Anyone also diagnosed with APS?
I found this one: www.forumjar.com/forums/Antiphospholipid_syndrome

I don't know if it's any good though.
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