N-Plate?

We consulted another Hem-Oc, one of the options is N-Plate. Platelets have been in single digits for several months, mostly below 5,000. Fibrosis is a major concern, and he is terrified of having a bone marrow done. Please share your experiences with this drug. Positive and negative. So much to consider, this Dr. is a 4-5 hour drive, results vs. risk, and financial. How often did your child have the injections, and for how long?

He is 12 years old, 3 yrs post diagnoses. Treatments: IVIG (twice), Prednisone, Win-Rho, Rituxan.
After Rituxan he maintained platelets above 50,000 for 6-8 months. Neither doctor seems anxious to repeat this treatment, that is my first choice at this time. Any one else tried this? So far he has not had any uncontrollable bleeds, so part of me says leave things alone for a while another part is terrified of an accident causing a trauma. We will see the new Dr. within the week to come up with a treatment plan, please share your experiences.

Nplate was miserable for me I had a stroke at 25 my doctor tried to get me in the normal platelet range which it's not supposed to be used for I don't tell people this to scare them I tell them cause I don't want anyone to have to go through what I did. Some people do fine on it just be careful hope this helped

My son is on plate, he is 3 years old & has had 4 doses so far. No response yet. He is a non responder & we are trying to find something that will work for him. He is also on Rituxen. We go for weekly inject of nplate. The goal is to get him to 50k & maintain at that level. No issues at all so far.

I'm 50 years old now and have had ITP for 25 years. I have tried Prednisone, Rituxan and never worked for me. In April i found out i have Prostrate Cancer' the doctors decided to remove it' My plate count was 42m and they wouldn't do the surgery with out my plate count was above 60m. I had two double injections of Nplate one per week and my count went from 42m to 250m. Had the surgery and every thing went great.My current count is dropping last read was 148m,for me i'm not staying on the Nplate unless i have to have surgery. The only side effect i had was insomnia.
Hope this helps
Terry

I asked my doctor about this treatment due to so far nothing has worked for me I currently set at a count of 15. He said that there is a 25% chance of developing leukemia from it so that has scared me away from it.

kimmieko22 wrote: I asked my doctor about this treatment due to so far nothing has worked for me I currently set at a count of 15. He said that there is a 25% chance of developing leukemia from it so that has scared me away from it.

What a terrible thing for a doctor to say when it is untrue. He is probably getting confused with the use of Nplate for MDS which does result in some patients developing leukaemia which is why it isn't used for MDS patients. There has been no evidence of such with ITP patients.

It isn't used much for children yet though so little information about.

Thats good to hear he just said that nplate works on bone marrow and sometimes it triggers mis growth which leads to leukemia

My son of 15 months(@13k)just recieved Nplate. His next blood level a week later dropped to 2K. He was admitted and given IVIG and Nplate together. Three days later 21k. Today 12k. Hmmm not effective for him. He was not grouchy and was very playful.

Nplate takes time to get to the right dose and it's a matter of raising the dose each week until the count is stable. So it needs time.

Having said that, it is fairly unusual to treat young children with Nplate. Does your child bleed at low counts or would the watch and wait method be more appropriate?