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March 3
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Answer Summary

Members with lupus shared that consistently low red blood cell counts are common in the condition, often caused by inflammation suppressing... Read more

Members with lupus shared that consistently low red blood cell counts are common in the condition, often caused by inflammation suppressing bone marrow function, autoimmune destruction of red blood cells, or kidney involvement affecting blood cell production. Several members recommended requesting comprehensive iron studies (including ferritin and transferrin saturation), checking vitamin B12 and thyroid levels, and discussing iron supplementation or IV iron infusions with doctors, while emphasizing the importance of ruling out iron deficiency before treatment since excess iron can damage organs. A recurring theme was the debilitating nature of lupus-related anemia, with members describing profound weakness, frequent falls, need for mobility aids, and the frustration of being told their severe symptoms are simply part of lupus, prompting advice to seek second opinions at major medical centers specializing in rheumatology.

A MyLupusTeam Member

Yes, mine is also low all the time. Have you had your iron levels, transferrin saturation, and ferritin checked? And are your hemoglobin and hematocrit low, too? Many of us have anemia because inflammation suppresses bone marrow function.

March 4 (edited)
A MyLupusTeam Member

Yes, I’ve experienced this as well. My red blood cell count has been low at times, and it definitely contributes to that overwhelming weakness and fatigue that many of us with lupus struggle with.

My doctors have monitored my blood counts closely because lupus can sometimes affect how the body produces or maintains red blood cells. When those numbers drop, it can lead to anemia, which can make you feel extremely tired, short of breath, lightheaded, and just overall drained.

In lupus, low red blood cells can happen for several reasons, such as:
• Chronic inflammation from lupus itself
• Autoimmune destruction of red blood cells
• Kidney involvement affecting erythropoietin production
• Medication side effects
• Iron or vitamin deficiencies

For me, the fatigue from low counts can feel just as challenging as the pain some days. It’s definitely something doctors usually watch closely with regular labs.

You’re not alone in experiencing this — many people with lupus deal with fluctuating blood counts. I hope your doctors are keeping a close eye on your labs and helping manage those levels so you can get some relief from the weakness and exhaustion. 💜

March 7
A MyLupusTeam Member

Sharon, it's very important to ensure that you're actually iron-deficient, because excessive iron can deposit in major organs, including the heart and liver, causing damage. The exact cause of your anemia must be determined, and B12/folate levels should also be checked.

Your degree of anemia and low albumin can accompany poor control of lupus or kidney disease. Are you seeing a rheumatologist at a major university medical center? U Pitt is among the top in rheumatology, and Penn and several other centers in your state are very good. I suggest you get a second opinion, as it sounds like you may not be getting the care you need.

March 7
A MyLupusTeam Member

Hi Natasha,
I know what you mean! I just got out of the shower and I'm totally wiped out. How did you get someone to give you iron intravenously? I get told since my hemoglobin is 10, I'm just fine. Gosh, I'd be so happy if someone offered to give me IV iron!😊

March 6
A MyLupusTeam Member

@A MyLupusTeam Member yes, my iron count was 3 then 4. I was giving 500ml iron intravenously in January 2026 at the hospital where I received the Loop-Recorder, but I have remained in this awful condition of being severely anemic thus experiencing fatigue, weakness, paleness every day. I can't do anything without collapsing or having presyncopes. It's annoying

March 6 (edited)

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