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Terrified and confused..

1249 Views 7 Replies 6 Participants Last post by  kcmmem
I misscarried last month. During that time i was also diagnosed as being RH neg. which is a condition where my immune system goes into overdrive and attacks the fetus because it sees it as a foreign matter..much like a virus. I was given the Rhogam shot to cause my body to build up antibodies that causes my immune system to not attack the fetus in the future. 2 weeks later I went to a follow up appt with my obgyn. He drew blood and tested for tons of different things including 3 different lupus panals. He called today to tell me that my lupus panal came back abnormal and they are referring me to a hemotoligist. I do have a rash on my my chest(redness really, not itchy like a rash) fatigue, occasional joint pain but Ive had joint injuries in the that wouldnt be uncommon. Im 29 now..I had two kidney stones when i was 15 but none since...should I be worried? Would cancer cause a lupus test to come back abnormal?
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Hi Tina,

Sorry about the baby. I am sure the shot will help with your next pregnancy. I am pretty new here and certainly not as knowledgeable as others on this forum but I will give this a shot. Others will be along shortly to answer too.

NO, Cancer would not cause a Lupus test to come back abnormal, or at least I have never heard of that. Some folks have Lupus with few complications and some that have been found to have Lupus did not even know something was wrong.

I am curious if he wants you to see a Rheumatologist along with a Hematologist? What Lupus panel came back abnormal, do you know? I always think it is a good idea to get copies of everything I have done so I can keep it in my personal medical file.

Take a deep breath and try to relax. What ever the abnormals are there is typically medicine that they can place you on to get it all under control. Maybe it is a Lupus Anticoagulant that came back abnormal and if that is the case it does not mean you have Lupus.

Do you know if you had a ANA titer done, and if so do you know what the results of this test showed? You have found a great place to come for support and information. Check out the board, read all you can. There are 11 criteria that are used when diagnosing Lupus along with abnormal blood work. Look at the criteria and let us know if any of them fit you.

Hope to get to know you better. Please, take a deep breath and relax. Other folks will be along shortly to welcome you. Feel free to join us in the chat room sometime.:wink2:
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See, thats why I came here! I didnt know what questions to ask! I just got off the phone with my obgyn it was the anti-coagulant that came back abnormal. They did do an ANA titer, but it had to be sent out and isnt back where does that leave me?

sorry for all the posts..Dr. also said that when they took the (TMI moment) Vaginal sonogram just before my D&C there was a blood clot visible in the sonogram..maybe that helps?
Hi Tina,

Welcome to the forum. I am sorry about your recent miscarriage:(.

Was this the first time you have been pregnant? Have you ever had a blood transfusion in the past?

Unless you've previously been pregnant, I doubt that being rhesus negative was the cause of this miscarriage. It is very unlikely you would start making antibodies until your first pregnancy. Mostly rhesus disease of the newborn affects a second baby, not the first one. Being given the rhogam (it is called anti-D in the UK) should prevent your next baby having problems. You yourself should have no symptoms or disease from your rhesus negative blood group. It is not a disease, just a blood group, and it is an unborn baby that can become ill from the antibodies, not you yourself. You will be given rhogam with your next pregnancy, and any subsequent pregnancies too.

It sounds like they have identified antibodies for Anti phospholipid syndrome in your blood. This is a completely different issue to Anti D/rhesus factor. APS is an autoimmune disease. It occurs often in people who have lupus, which is why one of the tests for it is called the lupus anticogulant. It also occurs on it's own, as primary APS. Actually APS is one of the most common reasons for recurrent miscarriage. Your docotr may be suspicious that this is the reason your baby dies, especially since they saw a clot (behind the placenta maybe?). The haematologist will explain more to you, and you can google APS and Hughes syndrome if you want to learn more too.

Unless you have symptoms of lupus, the chance is that you don't have lupus as well.

Officially if you have only had one miscarriage and one positive blood test you don't meet the criteria for APS yet either. Normally you need 3 or more succesive miscarriages and the blood tests to be found positive at least twice. Have you ever had a stroke, heart attack, pulmonary embolism, DVT or a stillborn baby? How many weeks pregnant were you with this loss? Tell the haematologist if you have ever had any of the above.

Depending on all the signs and symptoms, your haematologist may recommend a wait and see approach, or might want you to take a baby asprin when you get pregnant again. If there is conclusive evidence that you have APS then you may be recommended to have heparin (clexane) in addition to asprin with your next pregnancy.

Why do you ask about cancer? It is theoretically possible to develop antiphospholipid antibodies as a responce to cancer, ditto for HIV, but it isn't the first thing I'd worry about - unless you have a good reason to think you have cancer, it is much much more likely that you either have APS or that the positive test is fleetingly so and of no clinical consequence.

All the very best with the heamatologist.

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It sounds like you may have something known as APS=Anti-Phospholipid Syndrome. Technically, to be diagnosed you would need two blood tests several weeks apart in addition to a blood clotting incident (such as miscarriages).

Additionally, you may have some type of lupus but that remains to be seen... you could have a type of skin lupus only with the rash you mention on your chest. Or you could have systemic lupus, but that remains to be seen given the blood tests that remain to be done/come back from the lab. You would also likely need to be seen by a rheumatologist if you have concerns that you have lupus given your history.

So sorry to hear about your miscarriage. Without a doubt this must be a trying time for you, but it's a positive sign that your doctors have starting looking for an answer for you. Even if you do have APS/lupus, then with treatment you can feel much better and it is possible to carry a pregnancy to term with treatment. There is a big improvement in pregnancy rates once you are on treatment!

Welcome to the site - ask as many questions as you need to! No worries about asking questions - we welcome them!

{very rarely autoantibodies will form apparently due to a cancer in the body, but this is extremely rare so I wouldn't worry about that}
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Hello Tina, Very sorry about your baby. Just wanted you to know that you have been given good and accurate advice here. Sending a Hug I feel you need one.
x Lola
I am so sorry to hear all that you are going through. I have had several miscarriages. They were all when I was really young (and should not have been pregnant anyway) so they attributed the losses to my age and stress. A dr randomly ran some blood work and I came up positive for antiphospholipid syndrom (or hughes syndrome. They should call it that in the states because the name is shorter and easier). This does not mean you cannot try to have children again. You just have to do a little planning. You need to find a good high risk pregnancy OB and they will put you on Heprin either when you are trying to get pregnant or as soon as you find out you are. You should also stay away from estrogen birth control methods as estrogen can increase your risk of clots. I opted for an implant in my arm that is good for 3 years and has a better protection percentage than any other. I went through I time where I was terrified to have kids because I read all I could on the disorder. Now, after some time, I have decided that I will try. I am informed and know what it is going to involve and I know that there have been thousands of successfull pregnancies from women who have this. Not to say that I am not terrified, I am. But a million things can go wrong in ANY pregnancy. I know what I am facing and what I have to do to prepare. I am one step ahead of the game.
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