Hi...I posted earlier about the emotional ups and downs I am having and after I did that, I received a call from the nurse and she confirmed several abnormalities in my bloodwork that the rheumatologist did...first, I have high liver enzymes so they want to do further blood work and get an ultrasound of my liver. Has anyone had this and what could it mean?
Secondly, she told asked me if I was done having children (we are but I did have very difficult pregnancies with all three living children premature, one miscarriage, and one 20-week stillborn after water breaking because of infection) because whatever factor that is that can cause miscarriages (anticaogulant?) was positive (as I read Wallace's book, this may be called the antiphospholipid antibody. She also mentioned something with the word "cardio" in it, so as I read now, it may be the anticardiolipin antibody.
If anyone knows much about these let me know...also, my ANA was positive in October, but was negative this time, but I have been on steroids twice and took some natural supplements, and our family stress has been less.
I asked the nurse if my negative ANA meant that I didn't have lupus, and she said no, that they go by all of the symptoms (like the lesion I have on top of my head that has been there and not healed for 6 months).
Are there also those of you who have had your ANAs go from positive to negative like that?
I am really trying to understand all of this better so I won't be so stressed!
Yes, I often have mildly high liver enzymes that my rheumie attibutes to "lupus liver"--whatever the heck that means!
They're probably testing you for anti-smooth muscle antibodies, etc. that look for autoimmune hepatitis and other things that may raise LE's. Now, don't panic yet, just sounds like they're just covering all the bases to be safe, which is good. In me, these antibodies have been slightly elevated but they don't think I have AIH. I never had an ultrasound but did have a CT that showed liver lesions that I guess, are common.
Were your enzymes extremely high? Have you taken other common med.s for AI illness (i.e. plaquenil, NSAIDS) that can raise LE.s?
I LOVE the natural approach too, but please be careful and check with the Dr.s---some supplements can be dangerous to lupies or those w/ APS. Some can also raise LE's
Yes, ANA's go up and down in many people and oddly, doesn't always correspond with how rotten you're feeling. Once someone is diagnosed, many rheumies won't bother to test for that as it isn't an accurate indicator of disease activity.
Have Dr.s thought of doing a biopsy of the lesions on your head? Often that can rule out or dx. lupus.
Goodness, you've had a lot thrown at you all at once and of course you're stressed. It's all new, scary, confusing and very daunting. I'm so sorry!!
Hang in there, ask lots of questions and take it one test at a time.
I have had very high liver enzymes that range from slightly elevated to over 400 for 1 of them, but I'm not sure which one. I have also had Hepatitis with a severe Lupus flare. My Gastroenterologist said the elevated liver enzymes could just be from fatty liver, but my Rheumatologist doesn't think so, he thinks it is Lupus related. He also wanted me to have a biopsy, but the Gastro didn't think it was neccessary. It is unbelievable how they can play God with our health sometimes. In any event, I still don't know what caused the Hepatitis....fatty liver or Lupus, but my guess is that it was the Lupus since I was having a very bad flare at the time. And to answer another question, at the time of that severe flare my ANA was positive and stayed positive for over a year and then during another check-up it was negative. Then a year later it was positive again and if I'm right based on how I have been feeling the last few weeks, it is positive still. I take just Plaquenil for the Lupus, but I am also a diabetic, have hypothyroidism, so i take meds for both plus I take meds for stomch ulcers, Prevacid, as well as high blood pressure and depression. It is ironic that for the most part I don't feel depressed, however, at the slightest indication of a flare, depression is one of the things I suffer with....scary! All the pain killers I have gone off of because of my liver and I take motrin which is a anti-inflamatory so it does help a little but not much. The fibromyalgia seems to be what bothers me the most until I get in the sun and then the neuropathy comes out in full force and I can barely move. It is aweful.