Patient Comments: Neutropenia - Describe Your Experience

Please describe your experience with neutropenia

Comment from: Bobby, 35-44 Female (Patient) Published: July 30

As a child virtually everything would give me a rash if it touched my skin. My mum would take me to the family doctor asking why out of all the children she had I was the one getting all these rashes and randomly getting fevers. My dad would back my mum up but the doctor wasn't interested. It got to the point one of my older brothers and older sisters were worried about the random infections I got especially when I had bleeding feet but the doctor wasn't interested. I had few problems in my teenage years then around 21 I started to get frequent skin infections including on my face. No one knew why. At 35 I had lots of sinus issues. Again no one knew why. One family doctor was even rude enough to imply I was making them up as my blood test was 'normal'. Eventually at 37 a nurse did a full blood test to check why I was tired and ill. Amongst the results it was noted my neutrophil count was low. The test was repeated but it was normal. This worried a female family doctor who rang me up and told me to get antibiotics if I had any infections. The blood tests were repeated a few more times over the year with varying results from normal to low. I then got all my test results including the 'normal' one which was actually neutropenic, and noticed that my neutrophil counted varied from normal to low. I changed practices and another family doctor claimed my results were normal which I didn't believe as it's not normal to have skin infections, chills, sinus problems and gingivitis randomly. However one of his colleagues said to again get antibiotics if I was ill. I then spoke to a pediatrician I know and she said that it's likely I had cyclical neutropenia and to take hygiene precautions even though the neutropenia is mild. She said she sees it regularly and lots of family doctors just don't know what they are looking at so ignore it, while others are worried about it.

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Comment from: Chrishuk, 55-64 Male (Patient) Published: July 28

I have been on morphine for over a year and a half, 130 mg daily for knee pain. Recently I had pre operation tests done for a knee replacement which picked up a low white cell count. I've read that large doses of morphine can suppress white cell production and cause neutropenia. Apart from the knee pain I am relatively fit for a 64 year old male.

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Comment from: countrygirl, 55-64 Female (Patient) Published: June 30

I have neutropenia, was diagnosed over three years ago. I have a lot of weakness more than anything else, and over the years have had a lot of bladder infections. I recently had a bone marrow biopsy, but nothing was growing in the marrow. We have been doing the watch and wait thing, watching and waiting for T-cell LGL (large granular lymphocyte) leukemia. My doctor did a special test to find this. I still feel awful sometimes, I am on nothing for the neutropenia.

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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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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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