Your Autoimmune Neutropenia story
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I feel like most of the threads are “help me” threads, begging for advice or support. Perhaps it would be helpful for anyone who has been diagnosed with Autoimmune Neutropenia to share their story; initial symptoms, discovery process, living with the condition. It might help those who think they may being going through it, too.
I had frequent infections (URI, cold sores, stomach viruses) for a few years and swore to my husband that I had a poor immune system. Little did I know that it was literally true. In Oct. ‘17, I had labs done by a rheumatologist and my WBC/ANC came back 2.1/0.73. I received no call from that doctor regarding the abnormality but I noticed it via the online portal. Being a nurse, I knew to be concerned. I went to the ER for vertigo 2 days later and mentioned my abnormal labs to that Dr. but he lied to me at discharge and told me my labs came back normal. So when I saw the results I did some digging into my historical labs and saw that I had low WBC/ANC the previous year during pre-op labs. I had my PCP (GP) send me to a hematologist. He did some more labs and said, “It could be leukemia but I don’t think so. We should ‘watch and wait.’” I insisted on a bone marrow biopsy and he told me the results were normal and that he didn’t want to treat me when my numbers were low unless I got sick enough to be hospitalized. I was not satisfied with his lack of desire to find out WHY I was neutropenic so I went to Mayo. He retested the same BMB sample and said my results were not normal. I have reticulin fibrosis (scarring) in my marrow, which indicates that I’m developing another condition but since it’s in development, we don’t know what it is yet. He suspects lupus but I won’t know for 5-10 years.
Meanwhile, I’ve been working as a nurse in a hospital and haven’t gotten sick from a patient. My lowest numbers were last week at 1.9/0.2. Still no treatment because I’m not “sick.” In fact, I’ve not been getting sick lately at all, which is odd because my numbers are in the basement. I will be addressing this with my doctor next week. I think it might be because I’m aware of my condition and take precautions to avoid getting sick, especially at work.
My concern now is that my numbers keep declining and I don’t have much room to go before I literally have no neutrophils. They keep telling me they don’t want to treat me (with something like Neupogen) unless I get hospitalized but I fear by then I’ll be extremely sick. I did take 3 doses of Neupogen before a trip out of the country to avoid being hospitalized while on holiday. It is extremely painful, even though I took Claritin and paracetamol. I woke up in terrible pain and rocked back and forth in bed for hours. It’s not something I want to take on a regular basis but I need to stay safe. I also got a boil on my breast out of the blue. My skin would not have healed if not for the Neupogen at the time.
I should also mention that the first abnormal WBC I had was in 2014 but that my ANC was normal at that time. But it gives me a timeline of when things approximately started and how fast my numbers are changing. I’m to have another BMB in November to check on progression and changes. My sister just got a similar WBC result to that of my first abnormal result so she will be getting monitored for changes like mine.
1 like, 2 replies
ramona76143 LS1979
Posted
Hi
It's more than ten years that I've been having low WBS and also ANC (WBC 1,2 and ANC: 0,16 the lowest counts) that are unfortunately lowering in time. I was a sensitive baby and adolescent and suffered from colds and urinary infection , otitis& co and was on antibiotics really almost every month when I was little but I didn't comprehend the gravity until I was 20 years old (I had a late diagnosis) when I realised I'll have some problems having my teeth treatments as dentist is scared of possible consequences. I've had 3 marrow biopsies that seem normal (I'm not 100%sure as there's a slight dysmielopoiesis) and feel run-down.
I'm on vitamins to boost my energy levels and hope for the best. I have moments when I feel frustrated that I cannot live life like everyone else but there's little I can do about it.
My GP adviced me to avoid cinemas and gyms...(crowded areas) and keeps me under control with blood test every 2/3 months and that is a stress for me, not to mention when I'm waiting for some new lab or marrow biopsy result.
As far as treatment is concerned I'm on Iron and some pills for proteinuria (for the kidney)that came up recently and I only took some growth factors shots years ago.
Wish you the best
Ramona
LS1979 ramona76143
Posted
I had my 2nd BMB, which showed no signs of cancer. It shows I am making WBC's in my marrow but they go missing in my circulating blood, which indicates an autoimmune disease. My hematologist still thinks it'll be lupus but it will be years before it's detectable in my system.
Unfortunately, my counts tanked. I've gone as low at WBC 1.4 and ANC 0.08 and my average ANC is 0.14. So we started weekly neupogen, 100 mcg at first. It wasn't enough so we went to 200 mcg. After my second week I had all normal labs! I have a follow up appointment tomorrow.
Neupogen has terrible side effects and I very nearly gave up on taking it. My poor husband hovered over me like a helpless child because all I could do was vomit and writhe in pain. Luckily, I've found a regimine to keep the nausea/vomiting at bay (zofran, dramamine patch, HYDRATION, and if it's really bad, phenergan). The pain is still awful but I have been taking a low-strength pain pill (tramadol) to help take the edge off. My doctor feels like I shouldn't be having pain, despite many people on forums and youtube discussing the pain.
But regardless of the side effects, neupogen works and I'm able to continue working and being in public and that's important to me. I had gotten very disheartened by my poor health but it seems we're getting it under control.
I don't have troubles with my kidneys yet but I occasionally have some slightly elevated liver enzymes.