Patient Comments: Neutropenia - Symptoms

What symptoms did you experience with your neutropenia?

Comment from: Kathy, 45-54 Female (Patient) Published: April 30

I have had autoimmune neutropenia for over 10 years now! My current CBC was, WBC 1.8, and ANC 600. I have had multiple bone marrow biopsies, which have turned up nothing. No explanation. Over the past couple of years it has gotten worse, the mouth sores, skin boils, infections, chronic fatigue, muscle pain; this really knocks you down. I have had to be on Neupogen twice in the past two years, but we try to keep it limited as the side effects I get are terrible! There is not much information out there, but I keep looking! My best advice to everyone is to stay positive and capitalize on your good days, and rest on your bad days!

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Comment from: Cactuspooch, 19-24 Female (Patient) Published: October 30

Ever since I was a baby, my dad remembers I got these odd skin lesions. They continued, as I got older those 'skin lesions' got blown off as acne. Dermatologists even thought so, after all the lesions despite being inflamed and an off color, never showed signs of pus. Doctors noted the cultures always came back positive for MRSA. At 17 I saw a doctor specializing in infectious diseases. He tested me and made the realization I was living my whole life with neutropenia, ANC of 521. I get skin lesions, everywhere. Lately as I've gotten older it gets worse, I recently went to the hospital. Bacteria had entered my blood and infected my lungs and intestines. Now I'm on 100mg of Minocin daily for the rest of my life. Septra won't work anymore and the clindamycin is too dangerous to take for too long. I find myself lucky that I've lived for as long as I have, especially to have had it as a baby. I hope I continue to live. Sometimes I doubt the antibiotics are healthy to take long term but I realize that day I went to the hospital I could've died that night. I felt closer to death that night than I ever have, I thought I was going to fall asleep and pass away. It's scary, especially when you don't have insurance.

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Comment from: Eva, 65-74 Female (Patient) Published: January 21

I am a retired nurse, I had neutropenia all my life or at least 10 years. It was this new general physician that I went to recently that neutropenia was raised. I only suffered school sores as a kid, seldom get URTI (upper respiratory tract infections), and generally fit as a 66 year old. But now there is a sore in my lower lip that stubbornly wouldn't go away after 5 days!

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Comment from: janleigh1, 55-64 Female (Patient) Published: January 02

I was diagnosed in 2001 after my white count began to decrease. I also had a neurological reaction to the flu shot several years ago and then a less serious neurological reaction to the flu a couple of years later. I was diagnosed with multiple sclerosis. I saw an MS specialist in Houston who said I did not have MS. I have the autoimmune type of neutropenia. The doctors have been trying different amounts of Neupogen, but it only lasts about 36 hours and then my counts are down again. The Neulasta only lasted about 6 days, but I couldn't tolerate the side effects. I have been hospitalized about 5 times in the last 13 years for infections and fevers. I have to wear a mask when I fly and avoid crowded places. I wash my hands all the time, but I have been around my 2 year granddaughter when she is sick and I don't seem to get sick. A doctor said that he thought my other kinds of white cells were taking over a bit for my lack of neutrophils even though that count is also low. Two bone marrow biopsies and many doctors and all I got is a prescription for an antimicrobial body wash and mouthwash and finally the Neupogen. This has really affected my ability to work, but many people have it worse and the Neupogen cuts down my exposure time.

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Comment from: Sky, 19-24 Female (Patient) Published: May 13

I have had neutropenia since I was young but only just found out about it because I have been suffering with ulcers in my mouth and abscess on my face. I am now no GCSF and it's the best thing ever. I no longer have symptoms. Please talk to you doctor, because this is a very serious disease and they can help. I am having my second bone marrow biopsy next week.

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Comment from: Villagekathy, 55-64 Female (Patient) Published: April 02

I was just diagnosed with neutropenia. I felt fine until today, when I started getting sores in my mouth. I am not scheduled to see the doctor again for a couple of weeks. But I'm concerned, so I may contact him sooner.

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Patient Comments

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Neutropenia - Describe Your Experience Question: Please describe your experience with neutropenia
Neutropenia - Treatments Question: How did you treat 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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