Pregnancy - ITP (lupus symptoms & worry about APS)

Hello everyone! I haven't been on this site in quite some time but I need some expert opinions and advice. I just suffered a miscarriage at 8.5 weeks. I found out I was pregnant and went off my planquiel (i was at one a day) and was taking a baby asprin a day because I worry about APS.... being that I have lupus symptoms. My blood work has never confirmed having lupus or aps. At my 6 week ultrasound it showed a small genesational sac size and they worried right away that a miscariage might be emminent. At the 8 week scan everything looked great and the baby was developing normally. I just don't know what happened between 8 to 8.5. My counts held in the 30k range the whole time.

My question is, what can I do to ensure that we do everything we can to make sure this does not happen again? I have been researching and I want to see my high-risk OB to discuss a plan of action to ensure we do the most we can to prevent this from happening again. I believe they think the small sac size was the issue but I feel it has something to do with all my autoimmune issues.

I know that many of you know more than I so I was hoping you might be able to help with suggestions to my OB. Should I suggest that we keep me on my planquienl b/c I have read that it is not known to show any ill effects towards the baby? I wonder if I stay on that it will keep my lupus symptoms at bay and it helps keep my counts up too (60k). I read that IVIG can also helps with some autoimmune issues and it would raise my platlets even more. Maybe if we do this my platlets would be better and then we could think about Heparin to help with the APS aspect. I am planning on making an appointment with my OB but I want to be prepared and sound knowledgable. Any help would be greatly appreciated.

Thanks,

Jamie

Hey Jamie - nice to hear from you! I'm so sorry about the miscarriage.

Did they test for the APS antibodies since the miscarriage? If not, I think that's the very first step.

Thanks Sandi - I will have them test that again. I know it was tested just a few weeks back. I will bring that up. Was just reading that IVIG is good therapy for spontans abortions so I think I will bring that up. Seems to be a good idea since it would help with the ITP and APS.

Good luck and please stay in touch.

Well wanted to just let you know that at the moment I just had my first dose of IVIG (january 9th and 10th). I currently just went skiing this past weekend and pushed for IVIG b/c I wanted high counts and I also wanted to use IVIG for protection against aps b/c we started trying again for a child. My ob had suggested I do pred to help protect against autoimmune problems in pregnancy and spontanus abortion. When i went to my hemo I had told him that I really wanted to use IVIG to keep my counts up ( i am really just more worried about aps - but claming I want it for ITP seems to be the only way they will give my IVIG). I guess I was just curious if my counts stay stable they won't want to continue giving me IVIG (sure my counts won't stay stable though). I was wondering does anyone know of someone in the past that has had ITP and yet still took heparin/lovenox while pregnant?

My doctors are against that protocol b/c my blood work continues to say that I don't have lupus/aps - however I have had a positive syphillis test in the past and I am on planquiel which can hide the blood work showing that i have aps/lupus. I just really think I should do lovenox but they are so worried that I would hemmorage with my counts being in the 30's.

Does anyone know of successful people using that therapy with low counts?

How can I get my doctors to listen to me? It is so frustrating. I guess maybe I should see different doctors. Any suggestions.

Thanks for your advice and help .

Jamie - it's a very tough situation. Before I had my first child, I also tested positive for syphillis (VDRL), but I did have 3 children with no problems. Back then, I did not have ITP or Lupus and no one knew what the elevated VDRL even meant. Not having one of the 3 APS antibodies, you might have a hard time convincing any of the doctors that you should use a blood thinner. What about aspirin?

I've never heard that IVIG can protect against miscarriage. Maybe it does, I just haven't heard of that. Would they go for IVIG to keep your counts up and let you use a blood thinner then? Probably not protocol.