I hope nothing ends up being wrong with your other son! You asked me before about Caitlin's low white blood cell count and I forgot to respond. The drs were never worried about Caitlin's wbc unless it got below 2.0 and that really only happened once. She has a diagnosis of chronic neutropenia on top of her ITP diagnosis, but occasionally, her wbc does go up into the low normal wbc range.

They were really only worried about it when she was first diagnosed because they didn't know for sure if it could be ITP when her wbc at the time was 1.5. She was getting over the flu. When she got another blood test at the hospital to see what was going on, her wbc had jumped up to 2.1 so they were not as worried. They think Caitlin's "normal" is between 3.0 and 4.0 because she didn't have any symptoms of illness or extreme fatigue when her wbc was in that range. I really think the drs worry alot more about a high wbc than a low one. Keep us updated!

Shauna-Caitlin's initial ANA titer was really high at 1:1020 (almost 3 years ago)and she also has neutropenia (low white blood cell count). After not responding to some of the first line treatments, the hematologist ordered more tests to evaluate further. The results of these was what made her refer Caitlin to a rheumatologist and then she did all the tests, which revealed some things that meet the criteria for Lupus.

Sandi-we met another rheumatologist as well this morning (both came in) and I loved them both. They just seem so thorough with her. The reason they want her on the Plaquenil asap now is because she's been having such good counts. When we went before, her count was between 9-13 so they didn't even want to consider it with the idea that it could possibly lower her count. I hope Planquenil is what is keeping you in remission. That would be awesome if the same happens for Caitlin! I just wish this whole "protocol" thing with romiplostim would go away, but I do understand that they have to do what they have to do. If we go off the trial, we risk not being able to have the drug at all for her since it still isn't approved for pediatric patients.

I think I should introduce myself as I have been sitting on this site constantly for a week (is it only that long) since I became a member.
My story seems petty compared to others I am reading - good luck and love to Liz - but here goes.
My first blood test ever in July (53 y.o.). Energy low, painful feet particularly in the morning, R/sided neck pain for a couple of years. Worried my cholesterol would be up; ha! Results- moderate thrombocytopenia (platelets 74), mild neutropenia, red cells mildly hypochromic and microcytic (feels like I'm undressing ). Follow up tests showed everything else to be within range (gamma globulins below range??). Platelets went up and were 99 in September, then dropped to 60 in October - ouch.
I immediately stopped taking the herbs my naturopath had started me on in September and went back to the ones I had taken in July/August (rehmannia complex). Last blood test (2 days ago) they were 76. I'll post later in natural therapies forum about how my treatment is going.

I'm content that my only treatment options are natural therapies but wish there was more i could pin my hopes on. My naturopath has me alkalising my body through diet - it's summer here so the salads go down well, limit juices, green drinks etc. Peter, my best friend and partner puts on a good act when served tempeh salads regularly .
I am also taking supplements for thyroid function because although thyroid tests were in range apparently naturopaths like results to be at the upper range. Also probiotics and apple cider vinegar to ensure optimal absorption.

I don't know how long I have had this blood disorder - probably mildly and then exacerbated with menopause - but I feel some comfort for having an explanation for some of my 'weird' sensitivities (hot/cold, environmental).

Does anyone know how common hypochromatic and microcytic rbc's are with ITP ??

It was a Buzz and a breath of fresh air going on the Aussie/NZ chat group on Tuesday (I am a bit of a technophobe). This web site is a godsend - I just wish there was more positive stuff on complementary therapies. Thanks for reading my relatively dull story. Cheers, Sally

Hi, I just wanted to chime in since my daughter also has/is going through a similiar experience. She is 12, but was diagnosed with ITP when she was 8. About 6 months after diagnosis, her hematologist started running tests and she had a positive ANA with a high titer. She has never had APS as far as I know. Caitlin has enough of the indicators in her labs to be labelled "undifferentiated connective tissue disorder", but not enough to get the Lupus diagnosis. She has ITP, neutropenia (low white blood cells), positive ANA, and a positive dsdna. Her rheumatologist ran about 40 different labs to test for different things and said that she may or may not develop Lupus. She has also had fluctuations with her ANA titers, but I think that's normal. Caitlin really hasn't had any of the physical symptoms like joint pain. She occasionally has joint pain, but she is very, very active and we contribute her pain to this. Headaches are extrememly common with her and she gets cold sores every now and then. Those are probably the only physical symptoms we can pinpoint. Her rheumatologist has discussed the possibility of putting her on Plaquenil, but we have not done this yet. (Drs have ruled out CVID and something else, but they have looked several times into ALPS because she has some of the "cellular formations" of that, whatever that means.)

One thing I think important to consider: it may be best to avoid if possible, many commonly given OTC drugs. These are drugs that have evidence of causing ITP (usually referred to as thrombocytopenia)--certainly not in every one who takes them. But, those who are already struggling with low platelets may be more sensitive to these effects, so might choose to avoid them. In my experience, it's never a good idea to suppress the bodies natural tendency to heal itself (as in suppressing a fever, eruption or discharge). This may account for the differences of some seeing a rise in platelet counts, after an illness, while others see a drop.

April




Here is just a partial list of drugs that are known to cause thrombocytopenia in some:

Drugs Known to Cause Thrombocytopenia

Aspirin and non-steroidal, anti-inflammatory medications, such as
aspirin, Ibuprofen, Motrin, Advil, naproxen, naprosyn, and Aleve are medications that may interfere with platelet function and may cause bleeding.
Reference: www.childrenshospital.org/az/Site1138/mainpageS1138P0.html

Benadryl (Diphenhydramine) side effects for the
Hematologic System: Hemolytic anemia, thrombocytopenia, agranulocytosis.
Reference: www.drugs.com/sfx/diphenhydramine-side-effects.html
(Scroll down to Diphenhydramine Side Effects for the Professional)

Tylenol (acetaminophen)--Acute thrombocytopenia caused by sensitivity to the glucuronide conjugate of acetaminophen—a good article to read.
Reference: bloodjournal.hematologylibrary.org/cgi/content/full/109/8/3608

Coricidin D (acetaminophen/chlorpheniramine/phenylpropanolamine is a combination pain reliever/fever reducer/antihistamine and decongestant,
used to treat nasal congestion; itchy, watery eyes; itchy throat; sneezing; headache; fever; and other symptoms associated with allergies, hay fever, and the common cold.)
Hematologic side effects of chlorpheniramine have included bone marrow suppression, thrombocytopenia, and aplastic anemia.
Reference: www.drugs.com/sfx/coricidin-side-effects.html

Coricidin D HBP (same as above but with an added High Blood Pressure medicine)
Parents—be aware! It has become one of the most abused OTC drugs for teens in the 13-19 age range, as they can easily buy them at the drugstore, or find them in their parent’s medicine cabinet. It is an inexpensive and legal drug, easily available, so one of the fastest growing drug problems. Kids are taking 10-15 of them at a time, some have died from them, but they can cause many side effects, including liver damage and thrombocytopenia. Abusers report a heightened sense of perceptual awareness, altered time perception and visual hallucinations, much like LSD.
Street names are “Skittles” (they resemble the red Skittles candy),” Red Dragons”, “Red Devils”, “Red D’s”, “C’s”, “Cory (Cori)”, “CCC” and “TripleC”.

Robitussin Night Time Cough and Cold (a cough suppressant, expectorant and decongestant, used to teat stuffy nose, sinus congestion, cough, and chest congestion caused by the common cold or flu.)

Hematologic side effects have included hemolytic anemia, agranulocytosis, and thrombocytopenia.
Reference: www.drugs.com/sfx/robitussin-night-time-cough-cold-side-effects.html


Ciprofloxicin or Cipro (commonly used to treat UTIs)
Ciprofloxacin: Fatal thrombocytopenia and haemolytic anaemia: case report
A 30-year-old man died after developing thrombocytopenia and haemolytic anaemia while receiving ciprofloxacin for a suspected urinary tract infection (UTI).
www.highbeam.com/doc/1P3-1596663891.html
We report the case of a 72-year-old woman who was receiving intravenous ciprofloxacin for a urinary tract infection and developed thrombocytopenia during her hospital stay. Her platelet count dropped from 147 x 10(3)/mm3 on admission to as low as 21 x 10(3)/mm3 . On discontinuation of the drug, her platelet counts began to return to normal
www.ncbi.nlm.nih.gov/pubmed/16006282


Flagyl or metronidazole (An antibiotic effective against anaerobic bacteria and certain parasites, such as Giardia lamblia and ameba and Trichomonas, a vaginal parasite, Used to treat bacterial infections of the vagina, stomach, skin, joints, and respiratory tract.

Hematologic side effects have included reversible neutropenia (leukopenia) and reversible thrombocytopenia (rare).
Reference: www.drugs.com/sfx/flagyl-side-effects.html



Sulfonamide antibiotics

◦ carbamazepine [(Tegretol, Tegretol XR , Equetro, Carbatrol—used to treat epilepsy, as an anti-seizure drug, for nerve pain and bipolar],

◦ digoxin (Lanoxin-- used to treat congestive heart failure and atrial fibrillation)

◦ quinine (Quinerva, Quinite, QM-260—used to treat or prevent malaria)

◦ quinidine (Quinaglute, Quinidex—used to treat irregular heartbeat patterns)

◦ acetaminophen (Tylenol-- a pain reliever and a fever reducer)

◦ Rifampin. (Used to treat tuberculosis and certain kinds of bacterial infections)

Reference: www.medicinenet.com/thrombocytopenia_low_platelet_count/page2.htm




Sulfonamide antibiotics
"Sulfa allergy" is a term used to describe adverse drug reactions to sulfonamides, a group of drugs that includes those with and without antibiotic characteristics. Antibiotic sulfonamides were the first antibiotics used to treat infections, although today are used much less frequently given their common side effects. Common sulfa antibiotics include Septra®, Bactrim® and Pediazole®.

The antibiotic sulfonamides are different structurally from the non-antibiotic sulfonamides, and appear to be much more likely to result in allergic reactions

Blood reactions. Sulfa allergy can also affect various blood cells, resulting in decreased white blood cells, red blood cells, and platelets, through an immunologic-mediated manner.

Reference: allergies.about.com/od/medicationallergies/a/sulfa.htm



Valtrex (used to treat conditions related to the herpes virus, including shingles, cold sores, chickenpox, and genital herpes.)

A serious condition called thrombotic thrombocytopenic purpura/hemolytic uremic syndrome (TTP/HUS) has occurred in certain people taking Valtrex. TTP/HUS is a condition involving very low red blood cell and platelet counts. In TTP/HUS, the body forms many small blood clots. This dangerous condition has occurred in people with HIV and people who have had a stem cell transplant or kidney transplant. These people were taking unusually high doses of Valtrex (8 grams per day). Talk to your healthcare provider right away if you have signs of TTP/HUS, including unusual bruising and bleeding or unexplained fever.

Reference: herpes.emedtv.com/valtrex/valtrex-precautions-and-warnings.html


TTP/HUS, including some fatalities, has been reported during clinical trials in patients with advanced HIV disease and in allogeneic bone marrow transplant and renal transplant recipients, who were receiving 8 g valacyclovir per day.

Hematologic side effects have included thrombotic thrombocytopenic purpura/hemolytic uremic syndrome (TTP/HUS), and decreased neutrophil counts (18%), platelet counts (up to 3%), hemoglobin (up to 0.8%), and white blood cells (up to 1.3%). Thrombocytopenia, aplastic anemia, leukocytoclastic vasculitis, and TTP/HUS have been reported during postmarketing experience.

Reference: www.drugs.com/sfx/valtrex-side-effects.html






Prozac or fluoxetine (Used for depression)
Hematologic side effects include case reports which have suggested that fluoxetine may interfere with platelet function. Petechiae, increased bleeding times, epistaxis, and gastrointestinal hemorrhage have been reported rarely in association with fluoxetine therapy.
Reference: www.drugs.com/sfx/prozac-side-effects.html

Hematologic Side Effects of Psychotropics
Skop and Brown described 15 cases of SSRI-related bleeding in association with fluoxetine (ProzacTM), fluvoxamine (LuvoxTM), and paroxetine (PaxilTM) administration. Symptoms included ecchymosis (bruising), menorrhagia (abnormally heavy and prolonged menses), petechiae, bleeding internal hemorrhoids, epistaxis (nosebleed), ulceration with hemorrhage, and melena (black, tarry stools). Prozac was the most common offending agent. In another study, it was demonstrated that Prozac prevents serotonin-induced amplification of platelet aggregation. Prozac administered for 12 weeks at 100–150 mg/d reduced platelet serotonin to 11% of pretreatment concentrations. Patients with thrombocytopenia, suspected platelet dysfunction, or a history of unexplained bruising or bleeding should be monitored carefully when placed on Prozac or the other SSRIs.

Reference: psy.psychiatryonline.org/cgi/content/full/40/5/414


Wellbutrin (used to treat major depressive disorder and seasonal affective disorder.)
It may cause low platelet count (may cause bleeding problems) (rare).

This drug may also cause the following symptoms that are related to low platelet count:
* Abnormal menstrual bleeding (in females) Abnormal menstrual bleeding
* Vaginal bleeding Vaginal bleeding
* Abdominal bleeding Abdominal bleeding (rare)
* Bleeding gums Bleeding gums (rare)
* Bruising Bruising (rare)
* Low counts of all blood cells including red and white blood cells, and platelets Low counts of all blood cells including red and white blood cells, and platelets (rare)
* Nosebleeds Nosebleeds (rare)

Hematologic side effects of Wellbutrin have rarely included ecchymosis, anemia, leukocytosis, leukopenia, lymphadenopathy, pancytopenia, thrombocytopenia, and eosinophilia.

Reference:http://doublecheckmd.com/EffectsDetail.do?dname=Wellbutrin&sid=4319&eid=2241


Effexor or venlafaxine (used to treat major depressive disorder, anxiety, and panic disorder.)
Hemic and lymphatic system—Frequent: ecchymosis; Infrequent: anemia, leukocytosis, leukopenia, lymphadenopathy, thrombocythemia, thrombocytopenia; Rare: basophilia, bleeding time increased, cyanosis, eosinophilia, lymphocytosis, multiple myeloma, purpura.

Reference: www.drugs.com/sfx/venlafaxine-side-effects.html



Drug-induced thrombocytopenia occurs typically by causing an immune reaction in which drug bound to the platelet creates a new and “foreign” antigen. This disorder is indistinguishable from ITP except for the history of drug ingestion. When the drug is stopped, the platelet count typically begins to increase within 1 to 2 days and recovers to normal within 7 days. (A table of drugs reported to cause thrombocytopenia, together with analysis of the evidence for a causal relation of the drug to thrombocytopenia, is available at Platelets on the Web.)

Up to 5% of patients receiving unfractionated Heparin develop thrombocytopenia, which may occur even with very-low-dose Heparin (eg, used in flushes to keep IV or arterial lines open). The mechanism is usually immunologic. Bleeding can occur, but more commonly, platelets clump excessively, causing vessel obstruction, leading to paradoxical arterial and venous thromboses, which may be life threatening (eg, thromboembolic occlusion of limb arteries, strokes, acute MI). Heparin should be stopped in any patient who becomes thrombocytopenic or whose platelet count decreases by more than 50%. Because 5 days of heparin is sufficient to treat venous thrombosis and because most patients begin oral anticoagulants simultaneously with heparin, it is usually safe. Low mol wt heparin
(LMWH) may be less immunogenic than unfractionated heparin

Reference: www.merck.com/mmpe/sec11/ch133/ch133f.html

bloodjournal.hematologylibrary.org/cgi/content/full/113/26/6511?maxtoshow=&hits=10&RESULTFORMAT=&fulltext=ITP+immune&searchid=1&FIRSTINDEX=0&sortspec=relevance&resourcetype=HWCIT

Chronic lymphocytic leukemia: ITP-CLL. The most common neoplastic processes linked to ITP involve the hematopoietic compartment, although rare patients with solid tumors have been reported. ITP develops in 1% to 5% of patients with chronic lymphocytic leukemia (CLL), an incidence approximately one-tenth that of autoimmune hemolytic anemia (AHA).51–53 Older age and advanced stage are independent risk factors for AHA, but the predictive value of these risk factors for ITP-CLL is less apparent.54 ITP occurs a mean of 13 months from the diagnosis of CLL but may precede it or develop at any time. Indeed, small CD19/CD5-positive clones may be found in bone marrow from older patients with ITP.

ITP-CLL is associated with a higher frequency of unmutated IgVH genes, more frequent involvement of the VH1 family, and shorter 5-year survival.54 There is no evidence the malignant clone is responsible for antibody production. ITP-CLL may also be precipitated by fludarabine or other purine analogs that accelerate loss of CD4+, CD45RA+ cells.53 There is concern about using purine analogs to treat ITP based on experience in AHA.53 ITP-CLL is somewhat less responsive to IVIG and prednisone,54 but promising results have been obtained with rituximab and cyclosporine.


Hodgkin disease: ITP-HD. The prevalence of ITP–Hodgkin disease (HD) is estimated at 0.2% to 1%, with most cases occurring after the diagnosis of HD.56,57 In the British National Lymphoma Investigation Registry, 8 of 4090 patients with HD developed ITP after a median of 23 months,57 including 6 in remission. ITP often responds to treatment of HD and is rare in patients who have been in remission for many years.58 ITP is estimated to occur in 0.76% of patients with non-Hodgkin lymphoma without CLL and often precedes the diagnosis of lymphoma (n = 1850 non-Hodgkin lymphoma patients).

Large granular T-lymphocyte leukemia: ITP-LGL. Large granular T-lymphocyte leukemia (LGL) is a clonal proliferation of mature CD8+ T lymphocytes. Clonal populations of LGL cells are also detected in some patients with rheumatoid arthritis, and modest increases occur in some patients with ITP.60 Neutropenia, anemia, and mild thrombocytopenia are common in LGL leukemia. It is not clear whether the mechanisms underlying ITP in LGL leukemia, wherein LGL clonality and increases in the absolute CD8 count are sustained, are similar to reactive conditions in which the LGL count may be transiently or cyclically elevated.61 Severe thrombocytopenia, observed in approximately 1%,60 may result from suppression of megakaryopoiesis by LGL-mediated cytotoxicity.62 Treatment is directed against the LGL clone, using cyclophosphamide or cyclosporine.

Are we at increased risk for developing CLL,HD and LGL

Starting January 8, 2011 my son has been up and down with his platelet and neutrophil counts. The doctor has diagnosed as ITP, performed a bone marrow aspiration/biopsy which checked out fine, run other genetic testes, ANA tests, etc. and all appear fine. He checks out well on a physical exam, barely has signs of bleeding when his counts are as low as 10,000 and is active/healthy.

His was treated with IVIG twice without success and 2 rounds or Prednisolone that helped at first, but did not hold.

Anyone else had ITP with neutrophils affected too?

The doc thinks it is something immunological, but it's so hard to be going at this for 3 months without real answers.

Hi there. My son has had ITP and neutropenia since January 2011. He was 15mths at diagnosis and now 18 months old. He has had 2 treatments of IVIG, 2 rounds of prednisolone and a bone marrow biopsy. His counts have varied from 3,000 platelets to 270,000 (while on prednisolone). However, the treatments have not held a response for more than 3 weeks. We are getting another bone marrow biopsy tomorrow just to be sure. He has had a count of under 13,000 for the last 2 weeks and done well. We've adjusted our house to be as safe as possible...the main obstacle is his twin brother . I was very scared at first having a toddler with the ITP, but overall it has gone well. He has had petechiae, bruising and some bleeding at the nose, but handled the low numbers very well. Good luck! I hope your toddler's ITP resolves quickly.

Dru, I just found out another thing we have in common! You have hemolytic anemia and I have neutropenia (low white blood cells). I am assuming your low red cells is also autoimmune. My white blood cells follow my platelets.

My daughter is 5 years old and has been diagnosed with itp and it very healthy depsite the fact very similar to your son she has exerienced a lot of bruising because she is extremely active and very determined. we are now dealing with low neutrophil counts and are awaiting results I was just wondering since it has been a while since you have received your diagnosis for your baby what is possibly instore for mine because I am freaking out ....

While I am a grown up with ITP I'd thought I'd chime in! Since I was diagnosed in 2/2010 I've had extremely high Neutrophils. Doctor has never mentioned anything about it so I don't know. I've asked and he's said it's nothing to worry about.

My 5 year old was diagnosed with itp a little over 2 moths ago and anyone going through the diagnosis process knows it is a whirl wind of emotions especially when it is your baby instead of you. So far at her known lowest she has only fallen as low 14 it seems each time we have to start the discussion back up about IVIG her body goes into over drive and she increases back up to 18 or 20 so far we havent gone any higher Im skeptical of the timing of her diagnosis now being aware of the signs that she has been struggling with this longer; but being soooo active I never occured to her frequent bruising could be a sign of something much more serious. It wasnt until she received a bruise from a shopping cart the size of my hand on her thigh (now imagine she's five and has chicken legs a bruise the size of my hand is a a scary thing to see on a child this small) that the alarms went off. Despite all this and coming to terms and understanding of this diesease we are now facing a secondary diagnosis of neutropenia. Im confused and conflicted on why her body has turned against it self and feel so helpless in efforts to help her. This past week we hav been finally able to rule out any type of blood cancer which is a MAJOR relief. She is suppose to be starting kindergarten in 3 weeks and am petrified becasue she will no longer be under my 24 hour serveilance. I know there isnt much that can be done with these diagnosis especially at the risk levels she falls in but does anyone know of any type of homepathic methods or foods that can help. I just dont know what else to do...

I am an adult and my platelets and white blood cells follow each other. I just finished a 4.5 year remission. Platelets were 17k and whites were 2.4 (4.2 -10 is normal). My hema treats the platelets and the whites follow along. Of course now I'm on prednisone which messes up the white count, so who knows where they are!

I agree with Beth. I really don't think anything is a predictor one way or another because we are all so different. I also did all this research for splenectomy and I also found an article saying that poor response to IVIG may show poor response to splenectomy, but then again...that isn't necessarily true. (The article was old too.) Honestly, I don't think enough drs/patients are willing to wait a full 12 weeks of no response to see if there truly is a response. Part of it is because the patient is having bleeding episodes and really needs something else. (Caitlin is one of them.)

1. Steroids only worked a little for Caitlin. At 80 mg, her count went up to 40. We did short pulses. After the 3rd pulse, she had no response at all.
2. We don't think Caitlin responded to Rituximab, but it is very possible that she got a very delayed response. (Week 10 after last infusion, count was 10. Started Nplate that week and at week 11, her count was 410 so who knows!)
3. Her ITP is possibly secondary due to possible Lupus (positive ANA, elevated SED rate, neutropenia, positive dsDNA) and she is still on Plaquenil daily.

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!

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.

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!

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.

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.

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.

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 thought that autoimmune conditions often went with low lymphocytes. I've always had low lymphs, even long before ITP appeared. Neutrophils aren't usually low in ITP unless there's also an immune neutropenia present.. or so I thought.

Hi Scott, I'm interested in your white cell count because as a reaction to a vaccination I had last year I have had a low neutrophil (white cells) count for a while. I had 0.3 for a long time but it's gone up a bit now. I haven't been treated, the haematologist said that Neupogen can give painful side effects as in bone pain. Did you have any problems? Where I am they call normal over 2 so maybe they use a different measurement somehow. What is the normal range that they want you to have?

I've been on Nplate for a couple of years for the ITP which I've had for six years. It's been great and my platelet count is fairly stable, so good luck with that.

With me, the ITP and neutropenia aren't really connected although both are autoimmune, but if they occur together they are sometimes referred to as Evans Syndrome. How is your red count? Because with Evans it is more usual for them to be off than the whites.

I have had the same experience with my platelets and neutrophils. When one goes up the other goes down. Mine isn't strictly Evans. The neutropenia was due to a vaccination and I'm hoping that that has now actually resolved but it's hard to tell if it's just up while my platelets are down or if it's simply normalised.

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?

Yes you have to be careful when you're doing Google searches but if you're careful with the source, you can find creditable articles. Sources such as the centers for national health, publications such as the British Medical Journal, the Merck manual, professional organizations such as the american hematology society or major teaching universities and medical schools.

When I looked at the credible sites most of the information about copper deficiency is more around neutropenia and bone marrow disorders with outlier references to thrombocytopenia.
www.haematologica.org/content/92/10/1429.full.pdf

What I did find interesting, is the relationship to zinc. Because of a family history of macular degeneration they've always recommended that we take zinc supplements. I'll now be checking that there's also copper when I'm taking supplements with zinc.

My haematologist who is the primary UK expert doesn't do splenectomy any more. He says so in this talk..

fhs.mcmaster.ca/medicine/hematology/ITP-2010/player.html

Doesn't mean you don't have to have one yourself but something to think about.

When I had vaccinations for work last year I waited to see what the occupational nurse would do knowing that I had low platelets but he did nothing. He should have asked me my count and if low done the injections subcutaneously but he just went ahead with the intramuscular. I knew my count was good so I didn't say anything but I was pretty disgusted really. So you really do have to keep your wits about you and look out for yourself.

I can't comment on actually getting the vaccinations. My hep B one resulted in me having an immune neutropenia for 9 months which was fun. A blood test showed that the vaccination hadn't even taken but I won't be doing it again.