STARTING Nplate ~ Promacta did not work

Logan will start Nplate tomorrow. Anyone have side effects from it? He was on Promacta for 2 months with no level increase above 20K.
I get a lot of questions from friends and family about ITP. Is this doctor doing everything? Getting a 2nd opinion? Will he ever get better? How do you all deal with this? I know it is not just me hearing this!

Thanks for any support you can give.
-Heather

Logan (5) diagnosed 6/2009
No counts over 25k in 8 months

Hi Heather. Timothy says it makes him feel funny, but he seems to act normal. He has had some nausea as well, and one time threw up. Overall Nplate has been pretty easy on him, though...easier than the other meds (IVIg, WinRho, Steroids, Promacta).

As far as questions from relatives-I often get the same questions over and over from the same person. I think that everyone just really hopes they will be cured. We have that mindset these days because many serious illnesses have a cure or treatment that brings remission. Unfortunately, ITP is not one of them. Timothy says the most annoying question he gets is, "So, how do you treat that? With iron?" Many often think low platelets means anemia. Its funny how ignorant people can be about medical issues, but if my two sons were not chronically ill, I might be just as ignorant. I just answer the questions when they are asked. My son's say I tend to give more technical information that most people probably want, but to me knowledge equips.

I hope Nplate works out for you. Its been good for Timothy so far...I'll keep my eyes crossed..oh wait, that's fingers.

Side effects: I was on Eplate for 16 weeks at the minimum dose. I didn't realize that, at the time, I was eating Rolaids and tums....sometimes twice a day. Weeks after quiting NPlate,I saw the supersize Tums container in the cupboard....and then realized I hadn't eaten any for weeks. The other side effect: No consistency in platecount. 80K swings from week-to-week. NOW I'm on the verge of starting a Promacta regimen. 'One size doesn't fit all' when it comes to treatments. According to the Promacta data, it is critical that certain foods must be avoided hours before-and-after taking the pill. As a senior citizen set in his ways, this will take some serious adjustment on my part.

I understand how you feel when it comes to family & friends asking questions. I have found that if I don't talk about it to them, they don't ask. And I've also found that sometimes it's just simpler to say "They're doing fine" when they ask how my daughter is doing. It's easier to talk to the people on here than it is to talk to people who don't truly understand what is going on because even my mom questions if the dr is doing the right thing and doing everything they'r supposed to do.

What other treatments has your son tried? Has he tried any first-line treatments? My daughter tried IVIG first, but it really didn't bring her count up much. We were asked to join a study for Nplate so that was the only reason she tried a 2nd line treatment only 9 months after she was diagnosed. Her hematologist had also talked to us about Promacta, but felt like it was not a good drug for pediatric patients because it is harder to adjust the dose based on their weight. They are more supportive of Nplate, but they do not "promote" it in children because it is such a new drug and they really don't know the long-term effects. They prefer to do either the "watch and wait" approach or prednisone over any of the other treatments for children.

My daughter has gotten what's called "increased reticulin" from Nplate. We took her off for a while and tried some other treatments, but nothing else brought her count up to a safer level above 20 so we are about to put her back on Nplate. (Most ITPers have a small amount of reticulin in their bone marrow prior to starting and if they get more reticulin because of the drug, it decreases when they stop the drug.) Don't be surprised if Nplate doesn't work right away. Sometimes it takes "upping" the dose a few times before it actually works. Then it might work at a dose for a week or a few weeks then they will have to increase the dose again. Caitlin was on the maximum dose when she stopped (after 2 years) and will go back to the maximum dose again. Our hope is that it will bring her count "too high" this time so that they can decrease the dose and we will have some leeway on being able to increase her dose if we need to. And one main thing to keep in mind with Nplate, is that it has a target goal of keeping them around "50", not to get them into the normal range.

My advice to you is to read and research everything you can about the drug and to be comfortable with this decision. I hope your son will tolerate getting a shot every week. Caitlin was scared in the beginning but got used to it and now prefers to do this treatment more than any other treatment because she had minimal or no side effects most of the time.

I seem to get really bad mirgaines, i have the injection on the friday and by the next day i have servere migraines that keep me in bed for most of the weekend, last weekend, i slept for the majority of the weekend and headache started to go away by monday. I also get some joint and muscle pain in my legs and shoulders. I have also had some nausea and heartburn as well, but the only side effect i seem to get consistantly every week is the headaches, and it might just be because i am prone to headaches and migraines already.

Logan did okay with the first shot. However it took about 10 minutes to get him calmed down enough to get the shot. He seems to be more tired. Complaining of his stomach hurting. I don't know if it is because of the medicine or not. You know how 5 year olds can be.


Since he was diagnosed back in June 2009 we have tried most all treatments. IVIG, WhinRo, Steroids, Rituxin, nothing, Promacta and now Nplate. I feel positive about this medicine but we never know!

Thanks for everyones response!
Heather