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Parents of Children with ITP
General Discussion for Parents
therapy response time
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therapy response time 3 years 8 months ago #67614

  • gpT2
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Our little guy is 2 1/2 years old. Was diagnosed at 1 year with anemia and neutropenia. ITP diagnosis was added May 2019 after 2 concurrent common viruses. He has had 5 Romiplostim injections. Platelet count started in 3-4 range. It's now only 12 (with dosage increases each time). Can anyone tell me how many injections are reasonable/typical before you have an acceptable response?
And, is anyone dealing with neutropenia layered with thrombocytopenia?

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therapy response time 3 years 8 months ago #67627

  • Hal9000
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gpT2, take a look through these. This is a search on this forum for the word 'neutropenia'. Just off hand I see 'Evans Syndrome' mentioned in one case. Don't know if it is similar or not.
pdsa.org/discussion-group/search.html?query=neutropenia&searchdate=all&order=inc&childforums=1&start=0&limit=50

As for injections. It can take awhile. Just because there is no immediate platelet response doesn't necessarily mean the immune system is not reacting. As you may already know, a dose is a integer number and ranges from '1' to '10'. The higher the dose the more likely a response. Do you know what dose they are up to?

You mention two concurrent common viruses. Is that like the Flu and something else, or ?

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therapy response time 3 years 8 months ago #67629

  • gpT2
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Thanks for your response. I was incorrect about dosage. He is at the max dose. Has now had 3 injections at the maximum dosage. NPlates website boasts an effective response for most people at 1-3 doses. So far, he has not had that hoped for response. His bruising remains impressive.
I have heard a little about Evans but not much.
The viruses were common respiratory type viruses, not flu. Specific names escapes me.

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therapy response time 3 years 7 months ago #67643

  • Hal9000
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Ok. No response with max dose of Nplate can be a challenge. Three things come to mind.

- One would be to add Fostamatinib (aka Tavalisse) to Nplate. Then backing off Nplate dose if a response is seen. Ideally, one could eventually get to a Nplate dose of 0.
en.wikipedia.org/wiki/Fostamatinib
- The second thing would be to try Avatrombopag (aka Doptelet). This drug was recently approved for ITP. One's doctor may not know about it, or how to use it.
en.wikipedia.org/wiki/Avatrombopag
- A third thing would be to try Promacta (aka Eltrombopag) but not limit the dosage to 75mg. Go as high as 150mg. This new higher dose limit seems to work well for those that need the option. I think the term 'medically necessary' is needed for insurance approval. Not sure.
en.wikipedia.org/wiki/Eltrombopag

Hope this helps.
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therapy response time 3 years 7 months ago #67645

  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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Are Avatrombopag and Fostamatinib licensed for children in the US? They certainly aren't in the UK nor for adults for that matter. They don't feature on uptodate.com (Sept 2019) childhood ITP page. The recommended Eltrombopag starting dose for a child under the age of 6 is 25mg.
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therapy response time 3 years 7 months ago #67653

  • MelA
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www.accessdata.fda.gov/drugsatfda_docs/label/2019/210238s001lbl.pdf
8.4 Pediatric Use
Safety and effectiveness in pediatric patients have not been established

tavalisse.com/
What is TAVALISSE?
TAVALISSE is a prescription medication used to treat adults with low platelet counts due to chronic ITP when a prior treatment for ITP has not worked well enough. It is not known if TAVALISSE is safe and effective in children.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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therapy response time 3 years 7 months ago #67661

  • gpT2
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Good to know. Thank you.

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therapy response time 3 years 7 months ago #67680

  • th8899
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Only Promacta and NPlate are approved in US for children age 1 and above. I heard multiple people mentioned the combination of Promacta with Dapsone or CellCept worked for their kids. It may worth to try.

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therapy response time 3 years 7 months ago #67691

  • gpT2
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Thank you for the information. I am not familiar with those meds you mentioned, but will look into them if necessary. Doctors seem to be considering promacta at this point. It was not available earlier, so they went with the NPlate.

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therapy response time 3 years 7 months ago #67701

  • MelA
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Can't a side effect of CellCept [Mycophenolate] be anemia?
I really wonder if we should be telling a parent what medication/s they should give their child especially if that child has more than ITP - in this case anemia and neutropenia. Hal already suggested meds that aren't proven effective or safe for children.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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therapy response time 3 years 7 months ago #67711

  • Hal9000
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It's a difficult situation. Adult or child, information is vital. An attending doctor can judge relevancy.
I certainly do not know if this is the case here, but I think high dose Promacta is more effective than high dose Nplate when it comes to those ITP folks/children who have antibodies to Megakaryocytes. And that Avatrombopag is even better than Promacta.
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therapy response time 3 years 7 months ago #67713

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I don't think Hal was prescribing drugs, just sharing information and links on the cutting edge options that may or may not be safe or effective. Perhaps a disclaimer to that effect would have been helpful, but certainly, if I were back at square one, I'd want to know *all* the options, and it's very difficult to gather information, when even UpToDate is, well, not.

gpT2, does your child respond to ivig? Prednisone? Have you tried anything other than Nplate?

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therapy response time 3 years 7 months ago #67717

  • th8899
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@MelA, we are not giving any children unapproved med here. None of us is a medical professional, we are just providing ideas, which others could bring up with their doctors. For me, this is one of the major reason I join this forum. I'd like hear different ideas from all around the world. ITP is indeed a very rare disease and Evan is even more rare. One of my coworker's dad is a famous immunologist and he said they could not even do a study on Evan in one continent since it is just not enough patients.

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therapy response time 3 years 7 months ago #67720

  • MelA
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I stick by what I said. But I didn't say anyone was "prescribing", they were suggesting/telling.
Unless a drug/treatment/whatever is approved safe & effective for children it shouldn't be suggested for a child.
"- The second thing would be to try Avatrombopag (aka Doptelet). "

www.accessdata.fda.gov/drugsatfda_docs/label/2019/210238s001lbl.pdf
8.4 Pediatric Use
Safety and effectiveness in pediatric patients have not been established

Of course, we need to read and be informed and up to date - but we also need to be cautious what we suggest.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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therapy response time 3 years 7 months ago #67732

  • maria3132
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Fair enough :)
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therapy response time 3 years 7 months ago #67764

  • Hal9000
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I think it is common knowledge that Hal9000 is a serial killer of a spacecraft computer, LOL. No medical credentials at all. Nothing. Heck, I made a C in high school biology, the most advanced medical course I've taken.

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General Discussion for Parents
therapy response time

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