Autoimmune Neutropenia

Hi all, I have had neutropenia and low white cell counts since 2010, is is 'isolated' and of unknown origin and told that it is 'just they way my body is'. I have had bone marrow biopsies which showed slight abnormalities in the way my body makes neutrophils but not enough to say this is the cause. The heamatologist has told me that is is genetic although until recently couldn't work out where from. Like some of you on here I also suffer from fatigue, and diagnosed with IBS a few years after finding out about the neutropenia. They just don't know why I have it. I'm writing on here as recently, my neutropenia has seemed to have gotten worse. Normally, I get colds and flu and infections but my body seems to fight it off even though it takes twice as long as a healthy person but this time, I have had a cold which has completely wiped out my neutrophils and they have no idea why. They have put me on anti-virals as I suffer from chronic coldsores and if left they spread all over my face on my skin, but they are waiting to see if I get better after 5 days of taking them. Every day I feel worse and worse and don't seem to be getting any better. To make matters worse, my mum has just been told out of the blue that she has mulitple organ failure and low immunity diagnosed from a blood test and they just have no clue as to why or where that came from, she has felt ill from time to time but nothing serious. I'm so worried for us both, does anyone have any advice or had a similar situation to me?

Hi I've had neutropenia 10 yrs, my lowest counts being 0.03, at the moment they are 0.1 and I am suffering with fatigue and joint pains when they are this low, haematologist discharged me but my GP not happy So referred me back as I generally feel unwell and had 2 bad infections last year, just wondering does GCSF have a good effect?

Hi sorry to hear you've been unwell. i have autoimmune neutropenia but have no experience of g-csf injections so unfortunately i cant offer any advice. i do suffer with fatigue and pain but my inflammatory markers are normally ok so no one can explain it

Hi Katie K, I'm Ramona and it's more than 12 years now that I've been struggling with immune neutropenia (I have positive antineutrophil ANCA antibodies ) and apart from fatigue and mouth sores I've been almost all right. Recently ,after kidney problems( losing proteins with my urine)I've done a kidney biopsy showing : AA Amyloidosis. Maybe I also have Behcet disease. (vasculitis) we're not sure cause blood antibodies ANA , ENA ARE NEGATIVE. It's important to watch serum amiloid A (simple blood test) when you have inflammatory conditions 'cause it can damage kidneys in years (rare condition). Serum amiloid A must be less than 10. Wish you well!

I think antibiotics can help her. Although i would say talk to the GP about options.

hiya. i'm 21 years old and have had neutropenia for the past 6 months (as far as i'm aware) - it might be longer but unfortunately the only other blood test on the system was from 2015. where my neutrophils were actually normal at 3.9, they are currently 0.8. i was wondering how people are managing with their neutropenia and whether others had to have blood cancers ruled out? i imagine that will be the next step now i've been referred to haematology and i'm of course pretty anxious as everything online just seems to point to blood cancers... autoimmune tests were negative for me, and i have no signs of infection but do experience fatigue often and muscle/bone aches

I think she should try increasing vitamin levels, and also antibiotics.

Hi Everyone,

I'm new to autoimmune neutropenia, though I have evidence that this may be something I've had for many years (I'm 32, had 2 healthy pregnancies, type 1 diabetic for 17 yrs). Fortunately, I've not had any significant infections, but after being monitored by a hematologist for the past 9-ish months, my neutrophil count has dipped down a few times (lowest was in the 300s, some in 500s). Bone marrow biopsy pointed to autoimmune with nothing terrible noted there (which is good I guess, though my hematologist thinks the neutropenia is an early symptom of a larger autoimmune diagnosis to come at some point). I have classic symptoms at times -- fatigue, bone/joint pain, night sweats, low grade fever, mouth sores, etc. Other times, nothing really of note. With the limited information I have, I think my baseline is somewhere in the 8-900 range, which isn't terrible, but I have recent evidence of some severe/critical lows, so I sort of just have to 'wait and see' how things progress to get a better idea of what my 'normal' is (also frustrating).

My question to everyone is this: How do you maintain a "normal" life with autoimmune neutropenia? There are times when I'm stable (low, but not critically so), and others where my neutrophil and WBC counts are low...but without testing constantly, I don't always know when that is happening. Does this impact your ability to work/function in society? I am in a unique position in that I was diagnosed in the time of covid, where everyone was masking, distancing, and functioning remotely. This was actually a benefit for me while I was trying to get an idea of what was going on. However, as the world starts moving back to 'normal,' I'm not entirely sure what are reasonable accommodations for someone living with this disorder, or simply where to start.

It was very encouraging to find this thread. I hope you are all staying well and I am grateful for any insight anyone might have. (Edit: To note, I am in the US)