Patient Comments: Neutropenia - Describe Your Experience

Please describe your experience with neutropenia

Comment from: AW, 25-34 Male (Patient) Published: July 13

I was diagnosed with borderline neutropenia over 2 years ago. I've had a sort of acne on my face and chest since puberty and never been able to get rid of it. I must get some biopsies of the spots done sometime. Also I am quite a moody person that has energetic days and low days. Total count is 3.6 (normal range 4 to 11) and neutrophils is 1.6 (normal range is 1.8 to 7.5). Lately I've had some mouth sores and a flare up of the spots. I must get tests done again soon. When younger I had tonsillitis almost all of the time and was overprescribed penicillin and other antibiotics for years before finally having my tonsils out. This may have been part of the cause. I avoid antibiotics whenever possible these days as they wipe out the bad bugs, and also any good antibodies built up, your whole resistance. I rarely get colds and refuse to get flu shots these days, would rather get a flu than heavy metals in my veins; cancer anyway. I got all travel vaccines once, six injections in one appointment, and had no problems at all.

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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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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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