Patient Comments: Neutropenia - Describe Your Experience

Please describe your experience with neutropenia

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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Comment from: Roux's Mom, 55-64 Female (Caregiver) Published: January 08

I was diagnosed with benign cyclical neutropenia when I was in my teens. I had a bone marrow biopsy, which showed my marrow is making white cells. The diagnosis was precipitated by a bout I had with mononucleosis. The only real trouble I have had through the years has been cold sores in my mouth on a recurring basis and perhaps a few more colds than normal. When I had breast cancer a few years back, the neutropenia made chemotherapy difficult, because the doctors wanted to see my white count higher when I had the treatments. My count cycles were between about 750 and 1500. Now that I am getting older, it seems I am getting colds more frequently. I know my count cycles about every three weeks and that's how often my cold sores show up and is usually when I get a cold.

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Comment from: JanB, 55-64 (Patient) Published: December 05

In reflection I've probably had neutropenia all of my life although only diagnosed at 55. At 18 months old I had convulsions caused from a high temperature from tonsillitis. I've had tonsillitis 4 to 5 times a year all of my life, mouth ulcers and sore throats too. I went to a naturopath 2 years ago and he cured my tonsillitis with herbal remedies. I still am getting mouth ulcers (I gargle with salty water) and getting sick with the flu. I should go back to the naturopath as the stuff worked in enhancing my immune system greatly. Some of it was Goldenseal and Astragalus.

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Comment from: Gordon, 55-64 Male (Patient) Published: November 07

I was diagnosed with neutropenia in January 2010. In November 2009 I had the H1N1 vaccine, the next day I could not get out of bed. After a visit to the doctor and blood test my WBC count is 2.1 and my neutrophil count is 0.9. I was healthy and working at age 56, my blood count is still the same, but I haven't worked since.

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Patient Comments

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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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