One Patient's Positive Perspectives

Coping with Lupus: Blood disorders such as anemia (too few red blood cells) are common in lupus, and can greatly affect the health of lupus patients.  A few blood related (hematological) conditions really matter in lupus.  Blood related issues are usually treated by hematologists, the specialists who know the most about helping patients with blood disorders.  A rheumatologist might ask a hematologist to help treat their lupus patient that has a blood disorder.

Anemia in childhood and pregnancy

Several times as a child and during both of my pregnancies, I had serious anemia.  My main symptom each time was overwhelming fatigue and exhaustion.  During my pregnancies the anemia made my doctors very concerned about my unborn babies’ health, too.   Since they hadn’t yet found my lupus, my doctors probably didn’t consider if my anemia was connected to lupus, but they gave me special prescription iron supplements to help me.

During my pregnancies, my doctor even prescribed eating liver for dinner once a week! I had always hated liver (yuck!) but I loved my babies-to-be, so I set out to force myself to follow the doctor’s orders.  My husband loves a good dinner of liver and onions, so he loved the change to our menu!  Eventually, I even started liking liver!

Lab tests for Lupus Blood Disorders

Lab Tests for Lupus Blood Disorders

Like most other lupus patients, my rheumatologist orders regular blood tests to watch for anemia and other blood problems, since lupus constantly changes how it affects the different systems of my body.  My doctor sends me for new blood tests every three months.  These regular blood tests are a very important part of my lupus treatment plan. Blood tests will alert my doctors to lupus related blood conditions such as anemia, thrombocytopenia, leukopenia, neutropenia and thrombosis.

Here is some brief information that I have put together from reading about lupus-related blood disorders at great sources such as the Lupus Foundation of America, in their article about lupus and Blood Disorders, wonderful sites like the National Institutes of Health articles like their Handout on Health: Systemic Lupus Erythematosus, and many other reliable resources.

Too few red blood cells


Red blood cells live about four months and are made all the time by the bone marrow.  About half of all lupus patients have low hemoglobin (too few red blood cells.)  Anemia is the most often diagnosed blood disorder in lupus patients, and fatigue is usually the first symptom.

  • Most anemia is due to reduced red cell production.
  • Sometimes, anemia is due to early red cell destruction (hemolytic anemia.)

Too few platelets


Blood platelets are very tiny blood cells made by special huge “factory” cells in your bone marrow and blood called megakaryocytes (large+nut+cell.)  The platelets are sent out into bone marrow and blood as many break away like “nuts falling from a tree.”  Platelets are what help your blood stick together to stop bleeding in a wound, so, these little tiny little cells are very important!

Thrombocytopenia happens when there’s too few platelets.  Without enough platelets, a patient bruises easily, can get small bleeding spots in their skin, and can easily get frequent nose bleeds or bleeding in other places.  Lupus thrombocytopenia is caused by lupus antibodies, but may not need special treatments, besides controlling the lupus that causes it.

Medicines like prednisone, azathioprine, rituximab or intravenous gamma-globulin sometimes help control thrombocytopenia.  In some of the worst cases of thrombocytopenia, a patient’s spleen might even be taken out so it won’t filter the platelets out of a patient’s blood.

Too few white blood cells

Leukopenia and Neutropenia

Doctors watch their lupus patients’ lab results to see if leukopenia or neutropenia show up, when their numbers of white blood cells that help fight infections drop too low. They protect the body from viruses, bacteria, toxic substances, parasites, and tumor cells.  Having a low white blood cell count is leukopenia, and having a low count of a certain type of white blood cells called granulocytes is neutropenia. Sometimes a patient doesn’t make enough white blood cells, and sometimes they are destroyed by lupus or lupus medicines.

Blood is too sticky


Blood is usually a liquid, but when we get hurt or wounded, our blood gets thick and clots in wounds to plug them up. Without our blood clotting (coagulating or hemostasis) we might bleed without ever stopping, and that could have some pretty horrible results!

Some patient’s blood clots too easily, where it shouldn’t, and can cause a dangerous situation called thrombosis. A clot (a thrombus) might block the flow of blood vessels, or break apart (an embolus) and travel through blood vessels to block blood flow in a totally different place.  Lupus patients with antiphospholipid antibodies have a greater risk of blood clots.  Anti-clotting medicine like warfarin (Coumadin) is sometimes given to “thin” a lupus patient’s blood who has thrombosis.  Taking aspirin may not help thrombosis, and might even be dangerous, especially without a doctor’s advice and supervision.

Symptoms of thrombosis might show up in as swelling calves and ankles, and when a finger is poked into the swelling it sometimes leaves a dent, (called pitting edema or swelling.)  When that happens, getting some immediate medical attention is a great idea!  The swelling might be a sign of a possible blot clot and prompt treatment might even save a patient’s life.  Only a doctor can figure out if swelling is caused by a blood clot.  Blood clots in a pregnant patient can even hurt their unborn baby.

My personal connection to a serious blood disorder

Travel increases risk of thrombosis

Thrombosis has a special concern in our family that has nothing to do with my lupus.  We learned a few years ago that my husband was born with a hereditary blood disorder that causes thrombosis, called a Leiden V Gene Mutation.  He experienced a serious deep vein thrombosis (DVT) in the whole length of the largest vein in his left leg.  He was hospitalized for several days observation and treatment with low molecular weight heparin (Lovonox) injections.  The concern was a potentially fatal complication that might happen if an embolus might break  away from the clot and travel to his lung.

As a result, we learned more about thrombosis, and he will take coumadin every day for the rest of his life to try to prevent the return of any more clots.  During long road or airline trips, he also has to take the Lovonox injections again and stop to get up and walk around for a few minutes every hour or two.  He also uses a testing machine every 2 weeks to test his PT/INR reading, and his doctor gets sent the results electronically from the machine via the company that operates the home lab service.

The oncologist who treated his blood disorder explained that research showed risks for thrombosis are greatest for anyone after long periods of physical inactivity and sitting such as long airline flights.  Yet one more reason to get up and move once and awhile!


Comments on: "Coping with Lupus: Fact #19 – Common lupus blood disorders – anemia, thrombocytopenia and more" (1)

  1. Eulah Gillice said:

    Anemia can be always prevented by taking some iron supplements and also taking a diet that is mostly seafoods. `,*:`

    Warmest wishes“>

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