Neutropenia

I seem to have neutropenia in addition to ITP. Three blood tests in the last six weeks have shown a severely low neutrophil count. The first one also said something showed that it was due to a virus.. fair enough.. but now six weeks on and no virus that I know of and it's still the same. I have to go on Wednesday for more blood tests.

But I have to say that ITP fades into insignificance compared with this.

I'm sorry Ann - hope they can get this figured out and the "why" isn't bad.

Hi Ann, sorry to hear about your new complication.

My white blood cells have always seemed to follow my platelets. I was hospitalized in 2006 with neutropenia and ITP. My platelets were 6k and my whites were 1.3k (4.1 - 10 is normal). I had an infection at the time and my hema said it was life threatening because of the low whites. (I really didn't feel sick at all and had a great time with the nurses etc.in the hospital) There was a sign on my door that I was neutropenic. No one was allowed inside without a mask, nurses had to immediately wash their hands upon entering, I wasn't allowed any uncooked food and I had to wear a mask if I left the room. I got better with an IV of antibiotics, IVIG, a drug to increase my white cells, and prednisone. And afterwards when my platelets went down so did my whites. It was all solved with Rituxan that took care of them both.

This year also when my platelets crashed, my whites did too. This time my platelets were 7k and my whites were 2.6. My Gran number was 1.1 And again Rituxan put everything back to normal.

The nurse told me that what they really look at is the "Gran" number. If it is below 1.5 they said it is worrisome, above that and you are OK despite the low White Blood Cell count. (Sometimes the Gran number comes as a percentage, and I'm not sure how that translates.

What have your numbers been? If you have any infection or are running a fever make sure and call your Dr!

I'm sorry, Ann. It's always something! I hope they can figure out why - please let us know if you find anything out.

In September I had a viral infection with enlarged neck lymph node.
4 weeks later, my platelet count is still low (inch slightly up) & my WBC is down (the first time it has been so). I have to go back again this week as the doctor wants to monitor my counts hoping its not neutropenia. After more than 8 weeks there should be no virus.

Ann, hope your coming blood tests will turn out ok.
Yes, ITP does fade into insignificance compared to some other blood disorders.

Thanks to everyone for their comments. It's useful to hear others' experiences.

My white count is always low but it's usually lymphocytes that are low and not neutrophils. Neutrophil number or gran number is 0.3. I'm hoping it's a prolonged reaction either to a virus or the hep B vaccination I have had recently. Can't find anything much about neutropenia following vaccination but am still hoping that it just goes away.

I know the low neuts are concerning but I wanted to encourage you that my MIL lived 2.5yrs with between 100 and 200 neuts and NEVER got sick once. She took no drugs (used neupogen for 3-4 months but it was pointless and gave her nothing so she quit). Never had flu shots, etc. Just kept a really clean, healthy diet and did well. So while it's not ideal, if they don't come up you might do just fine with it as well.

It could be a delayed fluke...let's hope! I once had really high, atypical lymphocytes that lasted about six to eight weeks, but they eventually went back to normal.

Got my CBC done yesterday.
Platelet count has gone up to my 'normal low' i.e. close to 100.
But my WBC is still trending down.
My haematologist wants me to go back again next month for another CBC
& hope its a prolong reaction to the earlier virus.


Ann, how are your blood tests results?
Hope they are ok.

My son has low platelets and neutropenia and once they ruled out virus, the doctors diagnosed Evans Syndrome. You may have your doctors consider this and do some research about it. Evans is defined when more than one blood line is effected. Many times in Evans its the platelets and hemoglobin, but it can be WBC also.

Susan, yes, thanks, that is my hope (apart from it being a temporary blip), the lesser of the possibilities I'm thinking. I also think that this is their thinking as I've just had blood tests for all things autoimmune. Don't have all the results yet but DAT screen, which is what people here call Coombs, is positive (anti-IgG) although red count and haemoglobin is good.

I don't get to talk to the doctor much and just get called into the day unit for bloods which is not a good thing as far as I'm concerned as I really need to talk to someone to know what they're thinking and not just trawl the web with blood results and guess!

Could you put a call in to the doctor? I think I'd want to know too.

I could be wrong, but I thought Evans is more associated with children or younger person.
For me my concern (due to my age) is a possiblity of MDS or AA later.
Also my late mother had MDS/AML.

Lindy, have you had a bone marrow biopsy? That's my next step.

Evans is more associated with children but not entirely and it's better than AA or MDS!

Haven't done BMB. My haematologist wants to continue to monitor my counts till Dec.
If it continues to trend down, he may proceed with one next year.

When I was first diagnosed with ITP I was so scared & depressed.
Now it seems insignificant compared to other blood/marrow disorders.

What are your levels? Last week my neutrophils were still at 0.3 and my lymphocytes lower than they've ever been before at 0.5.

I was never really scared or depressed about ITP but this has me literally feeling sick with worry. I must be the only one here who is glad to be offered a BMB.

Ann, in this case, the BMB is probably warranted. You've never had one yet?

I had a BMB in 2009 before starting the Nplate. It was a condition of being on the trial. It didn't bother me so I'm not worried.

Ann...what dose are you on with Nplate? Correct me if I'm wrong, but you are already a cancer survivor, right? If so, I would definitely get the BMB asap to make sure you haven't relapsed. Caitlin has Neutropenia, but she's had it since she was diagnosed. Her neutrophils are usually low while her lymphocytes are high, but it is not usually in the danger zone. Her doctors here usually go by her ANC and if it gets below 500, they are very concerned. Her ANC was especially low after Rituximab. They've done two BMBs and other than the reticulin that showed up, everything was normal. Keep us updated and I'm praying that it ends up being nothing!

LOL.. gives me something else to worry about. Cancer was 23 years ago and I hadn't even thought about that. I'm having the BMB tomorrow.....Oh no, I'm watching a TV programme on computer and she's cooking bone marrow.. how revolting.

I'm on the lowest possible dose of Nplate. I don't imagine that has anything to do with it. I really think it's the vaccination I had which has been known to cause an immune neutropenia, and with already having antibodies against platelets, I may well have been just waiting for a trigger to set this off.

All this guessing does me no good but I have no paitence to wait and see.

We'll not worry about recurring cancer and we will go with the immunization theory - that makes the most sense.

Oh and Ann - flip the channel when you see boiling body parts!

PS - which vaccine was it?

Thank you Sandi, I like your way of thinking. The vaccine was hepatitis B. I've scoured the web and seen mention of it causing Evans but one report said it has never caused aplastic anaemia. Maybe I'm just seeing what I want to see but hey it's keeping me going.

Whatever it takes to get by is what I always say. The thing is, you never know what will spark a problem for someone. We're all different.

Well, official diagnosis is immune neutropenia most likely caused by the Hep B vaccination. A graph of my neutrophil count shows a bit of a dip in July with a very slight recovery followed by the bigger dip in August / September which fits with the three injections. It's the best outcome I could have hoped for and watch and wait and hope for a spontaneous remission is the order of the day. I won't be having the booster vaccination though!

Apparently because I am making neutrophils and just killing them off, if I get an infection I'll simply make more and hopefully cope with the infection. I may have to go to the GP for antibiotics on occasions but it's by far a better disorder to have than those where neutrophils simply aren't being made.

So woohoo!

I'm glad you are happy, Ann. Good news!

Darn vaccines! One reason why I stay faaaar away.

Hi i also have neutropenia. I live in texas where do u live? I know of a few support groups on facebook if u would like to join?

Hi Mona

I live in London in the UK, but it appears that my neutropenia has resolved and only lasted 6 months or so. It was long enough though for me to get an ear infection which wouldn't go and has resulted in residual tinnitus which is driving me nuts, so it has left its mark.

Hello Ann me and my son have neutropenia also how and when were you diagnosed?