Patient Comments: Neutropenia - Describe Your Experience

Please describe your experience with neutropenia

Comment from: Iris, 45-54 Female (Patient) Published: April 13

I had an episode where I was very ill in the mid 8's. I was so sick that I thought I was going to die. After blood tests, the doctor told me he had good news and bad news regarding the test results. So I asked for the good news first. The 'good' news was that I had Ross River fever, a mosquito borne illness here in Australia (the symptoms recur for years, some days I could not even get out of bed due to extreme joint pain, seemingly everywhere). The bad news he said was that I had neutropenia. I have now lived with neutropenia for about 30 years. Neutrophil count average is 1.5. Now it has dropped to .07 and my doctor would not tell me the results of the last test, but told me to stay away from sick people basically. Hence I am here worried, as this morning I have started feeling quite ill with fever, sore throat, etc. If this worsens I will be going to the doctors. Now to lie back down.

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Comment from: WorriedMom, 19-24 Female (Caregiver) Published: January 15

My daughter was diagnosed 3 years ago with severe neutropenia. No definite cause found, but her doctor suspects it may have started when she got a stomach parasite. After a 3 week dose of a strong antibiotic to kill the parasite, she had fever, hives, and arthritis symptoms. A few days of a treatment in the hospital the problems went away. Since that time she has stayed very healthy but has to watch for infections and fevers. Frustrating that there is no improvement. She does not get any Neupogen shots as her doctor sees no reason since she stays healthy without them. I wonder if anyone has ever had their blood count improve over time. Hers stays at 100.

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Comment from: Jo, 65-74 Female (Patient) Published: January 14

I was diagnosed with chronic familial neutropenia 18 years ago. I see a hematologist regularly and have had two bone marrow biopsies. I have no symptoms, don't get sick, don't have any mouth ulcers, etc. I am well, asymptomatic, but I keep an eye out.

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Comment from: Shepherdess7, 45-54 Female (Patient) Published: June 25

I just found out that I have neutropenia after having a low WBC since 2009 and no one ever said anything. I guess now that accounts for the fatigue, constant rashes that appear out of nowhere, and my inability to heal from simple things, and the freak incidents of bloody gums (even though I floss, brush like crazy, and oil cleanse). All I can say, is eat well. Change your diet, stop eating milk, dairy, and wheat. You will feel better quickly. At least it helps me.

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Comment from: SusanF, 35-44 Female (Patient) Published: May 07

I was diagnosed with neutropenia a few years ago. I've had several infections pneumonia, blisters on my lips, canker sores, yeast infections, infection and costochondritis, fevers and high blood pressure. But no real treatments given, just whatever clears up whatever infection that arises. I started taking B-12 and multi vitamin. I"m a very athletic person, or I was, but lately all this pain has taken a toll on my mental and physical health.

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Comment from: neutorpenic, 25-34 Female (Patient) Published: April 16

I was diagnosed with neutropenia at the age of 18, I have been through a battery of tests including many bone marrow biopsies. I am now 31 and no cause has been found, my neutrophil levels range between 0-0.4. I no longer take Neupogen due to a decreasing bone density. I experience chronic gum inflammation, and other mouth sores that I can usually manage. I frequently get colds and stomach bugs that I am able to cope with. I have received every vaccine that I am able to get and function relatively normal under certain infection control precautions.

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Comment from: Luigi, 55-64 Male (Patient) Published: March 04

I was diagnosed with neutropenia at age 62. Two years later we are still looking for the cause. Neutrophils are being produced in my bone marrow but killed off by my body defenses. My last blood count was 0.7. I have travelled to many parts of the world and picked up numerous parasites, hepatitis, and beaver fever. I have continuous pain in all parts of my body; chronic fatigue; headaches, nausea and urinary problems.

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Neutropenia - Treatments Question: How did you treat your neutropenia?
Neutropenia - Symptoms Question: What symptoms did you experience with your neutropenia?
Neutropenia - Diagnosis Question: In addition to blood tests, what other types of tests or exams did you have to determine the cause of your neutropenia?

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