Patient Comments: Neutropenia - Describe Your Experience

Please describe your experience with neutropenia

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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Comment from: Sarah, 75 or over Female (Caregiver) Published: October 08

My mum was diagnosed with T-cell LGLL in 2007 and had severe neutropenia. She was given cyclosporine but had a bad reaction to this course of medicine. Her neutrophils went up to 1.5 from 0.5 and stabilized at around 1.0, however, they have gone back down to 0.5 again and she suffers badly with mouth ulcers on her gums and tongue, but not sore gums as such. I know this form of leukemia is very rare.

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Comment from: Alehx, 0-2 Female (Caregiver) Published: January 16

My daughter was admitted in the hospital for dehydration and high fevers. Her white blood cells (WBC) and neutrophils (part of WBC) were extremely low than the normal range. These cells fight for infection. She was placed on reverse isolation and was put on "neutropenic precautions", meaning to protect her from getting any bacteria or germs because of her poor immune response which basically means she is susceptible for infection. Hematology (doctor for blood infections or cancer patients), was consulted. Her attending physician is an infectious disease doctor. They did all kinds of test such as blood count, virus tests etc. I am a nurse and if they do all these tests, I think maybe she has a more serious condition that I need to worry about. To make the long story short, results came back and she is positive for Epstein Barr Virus (EBV) which is commonly called infectious mononucleosis or the "kissing disease". And this virus usually causes the neutrophils to go down. Now she's fine and seems like she just had a typical common coughs and colds.

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Comment from: chiefdwd, 13-18 Female (Caregiver) Published: January 16

My daughter is 13 years old and has an extremely low white blood cell count. She has had bone marrow tests, CT scans, and biopsy of lymph nodes in her neck. She has had more blood test than I can mention. In a nut shell she has been through more than a frog in biology class. There are still no diagnoses from the doctors. She immediately fell into this condition after having her tonsils and adenoids removed. She has never really been seriously ill when growing up, just occasional ear ache and such. She even had all her wisdom teeth removed and recovered with no problems, but when her tonsil and adenoids were removed, she complained of severe ear pain, extreme headache and these symptoms were accompanied by a severe fever of 104 plus.

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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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