I have a 10 year old with ITP diagnosed a year ago. She runs with a platelet count under 10K pretty much consistently. Not a bleeder currently but last summer was covered in petechiae and having lots of nosebleeds. Bone marrow biopsy was done which ruled out the bad stuff (as if ITP isn't bad enough). So her hema started her on the month of prednisone. Her platelets went from 1k to 320k. She maintained platelet count for a month after going off prednisone dropping to 220k then bouncing back up to 250k on her own. Then we got a flu shot and the next week they plummeted to 19k and now we are sitting at 5k. This time though, hardly any bleeding symptoms. So for now we are using precautions for activities and giving her four shots of wheat grass daily, 2000 IU of vitamin D, Vitamin C, lots of vegs and whole foods (as whole as I can get with a 10 year old who wants to be like other kids), cut out most dairy, etc. We were doing pomegranate extract, but then I read in one study it causes platelet suppression?? Not sure what to make of that.
The doctor, who admittedly is not that familiar with ITP, often consults a specialist in another city for treatment. Seems like our hema always wants to leap to treatments with scary drugs but the ITP specialist seems to talk him out of it with a wait-and-see approach and try to use nothing since he says to treat the symptoms, not the count. Ok, so we have decided to save prednisone for times when (if) she has bleeding issues, and next time they will give it in 4 day bursts for 3 months or something since she responded so well. (She has not responded well to IvIg both times she has been administered it. First time she went up to 27k and second time she dropped from 3k to 1k).
According to Hal's chart I found on here (bottools.com/Hal/ItpTypes.html ) my daughter falls into the Type 2b ITP. Of course I realize this has not been confirmed by her doctor, but let's say this is the case for discussion sake. I note that Tamiflu is a possibility for treatment, and I looked up several studies done with Tamiflu, both alone and in combination with steroids that show some promise. First of all, why do the doctors not mention this to at least try it? Tamiflu seems far less harmful than steroids or IVIG or Promacta etc., and secondly, has anyone here tried it with any degree of success either in raising platelet counts or sustaining platelet counts?
Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006.
Last Count - 344k - 6-9-18
Thank you received: 2375
Doctors probably don't mention it because it is not yet a known, approved ITP treatment.
I'm not so sure that it's less harmful than other treatments after reading the side effects. Some of these are pretty serious:
The most common side effects were nausea and vomiting.
The most common side effects reported with this drug during studies for the treatment of influenza were nausea, vomiting, headache, bronchitis, insomnia, and vertigo. Nausea and vomiting were generally mild to moderate in severity and usually occurred on the first 2 days of therapy. Less than 1% of patients discontinued this drug early due to nausea and vomiting.
Side effects in prophylaxis studies were similar to those in treatment studies, most commonly nausea, vomiting, headache, and pain. Side effects that occurred more frequently than in treatment studies were aches and pains, rhinorrhea, dyspepsia, and upper respiratory tract infections.
Very common (10% or more): Headache (up to 18%)
Common (1% to 10%): Dizziness, vertigo
Frequency not reported: Drowsiness
Postmarketing reports: Seizure/convulsion.
Side effects with similar or higher incidence among placebo patients included dizziness and vertigo.
Very common (10% or more): Nausea
Common (1% to 10%): Nausea (without vomiting), vomiting, diarrhea, abdominal pain, upper abdominal pain, dyspepsia
Frequency not reported: Pseudomembranous colitis
Postmarketing reports: Gastrointestinal bleeding, hemorrhagic colitis.
Side effects with similar or higher incidence among placebo patients included diarrhea, abdominal pain, upper abdominal pain, and dyspepsia.
Common (1% to 10%): Nasal congestion, cough, sore throat, bronchitis, nasopharyngitis, upper respiratory tract infections, influenza, rhinorrhea, sinusitis
Frequency not reported: Pneumonia, peritonsillar abscess, congestion, rhinitis, dry sore throat, epistaxis, asthma, aggravated asthma.
Side effects with similar or higher incidence among placebo patients included cough, nasal congestion, sore throat, rhinorrhea, bronchitis, sinusitis, nasopharyngitis, upper respiratory tract infections, and influenza.
Common (1% to 10%): Insomnia
Frequency not reported: Mania
Postmarketing reports: Abnormal behavior, delirium, altered level of consciousness, confusion, delusions, hallucinations, agitation, anxiety, nightmares, self-injury.
Influenza can be associated with various neurologic and behavioral symptoms (including hallucinations, delirium, abnormal behavior), with fatal outcomes in some cases; such events may occur with encephalitis or encephalopathy but can occur without obvious severe disease. There are postmarketing reports (mostly in Japan) of delirium and abnormal behavior leading to injury, with fatal outcomes in some cases in influenza patients using this drug. Although frequency is unknown, based on usage, these events appear uncommon. These events were primarily reported in pediatric patients, often with abrupt onset and rapid resolution. The contribution of this drug to such events has not been established.
Side effects with similar or higher incidence among placebo patients included insomnia.
Side effects with similar or higher incidence among placebo patients included fatigue, pyrexia, influenza-like illness, and pain in limb.
Common (1% to 10%): Fatigue, pain, pyrexia, influenza-like illness, pain in limb, otitis media, earache
Uncommon (0.1% to 1%): Tympanic membrane disorder
Frequency not reported: Humerus fracture, malaise, sepsis, facial edema, ear disorder, accidental injury
Postmarketing reports: Hypothermia.
Side effects with similar or higher incidence among placebo patients included herpes simplex.
Common (1% to 10%): Herpes simplex
Uncommon (0.1% to 1%): Dermatitis (including allergic and atopic dermatitis)
Rare (less than 0.1%): Angioneurotic edema
Postmarketing reports: Rash, urticaria, eczema, serious skin reactions, toxic epidermal necrolysis, Stevens-Johnson syndrome, erythema multiforme.
Common (1% to 10%): Back pain, arthralgia, myalgia.
Side effects with similar or higher incidence among placebo patients included back pain, arthralgia, and myalgia.
Side effects with similar or higher incidence among placebo patients included dysmenorrhea.
Common (1% to 10%): Dysmenorrhea
Common (1% to 10%): Conjunctivitis (including red eyes, eye discharge, eye pain)
Rare (less than 0.1%): Visual disturbances.
Uncommon (0.1% to 1%): Elevated liver enzymes
Rare (less than 0.1%): Hepatic failure, fulminant hepatitis (including fatalities)
Frequency not reported: Hepatic function disorder, jaundice
Postmarketing reports: Hepatitis, abnormal liver function tests.
Postmarketing reports: Hypersensitivity reactions (e.g., allergic skin reactions), allergy, anaphylactic/anaphylactoid reactions, swelling of the face or tongue.
Frequency not reported: Unstable angina, sudden cardiopulmonary arrest
Postmarketing reports: Cardiac arrhythmia.
Frequency not reported: Hyperglycemia
Postmarketing reports: Aggravation of diabetes.
Frequency not reported: Anemia, pancytopenia, lymphadenopathy
Postmarketing reports: Thrombocytopenia
The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.
Platelet Disorder Support Association 8751 Brecksville Road, Suite 150, Cleveland, Ohio 44141 Phone: 1-87-PLATELET | 877-528-3538 (toll free) | or 440-746-9003 E-mail: firstname.lastname@example.org