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pearly1
member
Anybody know anything about auto-immune diseases?
pearly1
member
I know this is a long shot but I'm just hoping somebody has experience with auto-immune diseases.
The lab just emailed me my results from my recent blood draw, and my ANA screen came back "Positive, titer to follow."?I guess that means now they're going to count the ANA level? Anyway, They ordered the screen because my platelet count is going down, down, down.?
I've looked online at the diseases that ANA screens for and I don't feel like I have any symptoms of any of them! But I can't help but worry. I have an appt on Tues with my midwife and I'm sure she'll talk about it then, but Tuesday seems like a long way away...
Any experiences or advice to share?? Thanks!!!?
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Re: Anybody know anything about auto-immune diseases?
oh yes, I have experience.
ANA is a very very non-specific test for autoimmune disease. You can have that be positive but not have any "defined" disease that you can find on WebMD or anything. Lupus is the main one that you'll see, but I have positive ANAs but not Lupus. They just sort of say I have a "lupus-like condition"... it's not really any defined disease. I have anti-platelet antibodies as well - so my body eats my own platelets. Which isn't good, but it hasn't caused me any bleeding troubles or anything. I'm on meds that seem to keep that in check. My other issue is that I have antiphospholipid antibodies, that make my blood clot too much. Most people find this one out after having multiple miscarriages. Luckily for me, we found mine before I had any pregnancies. So I am on blood thinners for that, most people do it just during pregnancies, but we suspect that I have had small blood clots in my lungs so I'm on blood thinners for life.
Autoimmune diseases can really vary - from things that give you no symptoms at all, to things that really give you a lot of pain. There's a lot they don't know about them, but they seem to strike women in their 30s a LOT. The management of them is usually a "try this and see if it helps" type of thing.
Did you have any symptoms or did they just do it as part of routine blood work? If you need a name of a rheumatologist, I love mine - she's in Seattle at the Polyclinic - Pam Sheets.
Oh wait, I just saw your platelet thing. Now I see your symptom. I'm guessing you might have something similar to my deal. Although platelets do tend to drop in pregnancy, but not way way down. How low were yours?
If you need a perinatologist who really knows about all of this crazy autoimmune/blood stuff, mine was fantastic - Dr. Wall at Eastside Maternal Fetal Medicine. My hematologist is also great - he has even been known to call me on the weekends to see how I'm feeling - he's in Seattle at the Polyclinic - David White.
you can email me too if you'd like jilln_home@hotmail.com
Thank you so much Jill!
Yeah, they just discovered this through regular pg bloodwork. My platelets aren't super-low, but I'm worried because they're steadily dropping - they've gone from 139 to 119 in 6 weeks. I don't think I have any symptoms of anything - I bruise kind of easy but I always chalked that up to being klutzy, and my gums bleed when I floss, but don't everyone's?
Makes me feel better to hear you talk about it. Hopefully it's no biggie... I guess if I don't have any symptoms then that's a good sign.
DH was relieved to read your response too - I think it de-mystified it for him a little. He's been way more worried than I have.
?
Mine have been as low as 23. They are now usually around 250 now that I'm on Plaquenil. They did dip below 150 right at the end of my pregnancy, but they gave me some steroid shots for Ben's lungs since I was going to have him early - that pumped the platelets up so they were OK with me getting a spinal for the c-section. Low platelets can impact your options for an epidural or spinal.
If it were me, I would ask them to run the entire panel of blood clotting things... antiphospholipids, lupus anticoagulant, protein S and C (I think?), MTFHR, Factor V Leiden, and there are probably some others. But since you're pregnant, I would make sure to be over-cautious and get everything run that you can. You're past the point of an early m/c, but the blood clotting things can also cause risks late in the pregnancy, so it's best to get it all sorted out just in case.
They might put you on steroids to pump up your platelets. That works great, but isn't a long term fix. It should be safe though since you're later in the pregnancy. Usually they try to keep you off of them too early. Plaquenil is an anti-malarial medicine that for some (seemingly unknown) reason helps people with Lupus. They tried me on it and my platelets really bounced back and have stayed fine. It's safe in pregnancy. There's a related drug that caused eye problems in babies, so they list that as an issue on Plaquenil, but I had many doctors doing research on it for me and my own Google-searches, and Plaquenil is fine.
Anyway, push for more tests so you can make sure you know everything you need to be looking at. But hopefully it's just a weird pregnancy fluke. Autoimmune diseases can often flare in pregnancy, or can go dormant in pregnancy. The hormones whack everything out.