Unsure of diagnosis and what it means

[weaselbaumgartner]

I have suffered 2 miscarriages and following bloodtests have just been told i have mild lupus which is causing my blood to clot.I have been told i will be treated with aspirin and heparin and will have 70-80% chance of normal pregnency but will be monitored closely. I have read loads about lupus and i am now totally confused! I have had no symptoms of lupus at all and it has only emerged through miscarriages.What does this mean with regards to developing other problems associated with lupus and getting new symptoms? Does it progress?Or will it only ever affect me in pregnancies? Does anyone know?

louise. style_emoticons/<#EMO_DIR#>/sigh.gif

[cath]

Dear Louise,

Hi and welcome style_emoticons/<#EMO_DIR#>/flowers.gif , although I'm sorry for your reasoons for being here.

I can understand your confusion!! It seems like you haven't been given a very clear explanation.

From the symptoms you describe, it sounds like you may have Antiphospholipid syndrome (APS). This causes blood to clot more easily than normal and can cause miscarriages through causing clots in the placenta. Threatment with heparin and asprin during pregnancy changes your chances of a succesful pregnancy from a 70+% miscarriage rate to a succesful pregnancy rate of ~75%. There are two blood tests that can confirm this, the anticardiolipid antibodies and the Lupus anticoagulant. Generally doctors like to see a positive result in these blood tests at least twice, as well as clinical problems such as the miscarriages before they will give the diagnosis.

So what is the connection with Lupus?

About 1/3 of people with lupus also have APS. The majority of people with APS though don't have Lupus.
There is no single blood test or symptom which on its own can mean a person definitely has lupus. Of course I don't know which blood tests you've had or the results, or other possible problems. I'm wondering if though the reason they have sais Lupus to you is because the Lupus Anticoagulant was positive? This test is confusingly named. It was first descovered in people who also had lupus, but it is actually a test for APS.

I suggest you talk to your doctor again and get them to clarify things for you.

If you do just have primary APS, this may only be an issue during pregnancy or you might develop other clotting problems such as DVT's. Time will tell.

If you do end up being one of the people with both lupus and APS, again time will tell. If you don't have symptoms of lupus though, it doen't seem logical to label you with this, even if you do have positive blood tests to imply it might be a potential issue (eg ANA, anti DNA, Smith antibodies etc). Some people have positive bloods without symptoms. In this case they still don't have Lupus, but should be allert in case symptoms do develop.

Does this clear up the confusion at all?

You really need your doctor to clarify things for you. If it seems your doctor is confused too, you need to see someone who does understand what is going on, ie a specialist obsterician or a rheumatologist who specialises in Lupus. Not everyone has an equally good understanding!

All the very best, and let us know how you get on...

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[weaselbaumgartner]

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Hi Cath,

Thankyou so much for your reply-you have no idea how much it has helped!
It has also confirmed my thoughts that i need to seek further advice from rheumatologist.
My husband also read your reply and thought you were more knowledgeable than a doctor!
I will certainly keep you posted.

thanks again,

louise.

[cath]

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You're welcome

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