Promacta Week 1

My daughter has been on Promacta for about 1.5 weeks. Her first count (9 days after starting) was 253!
She has responded well in general to treatment, so I thought she would do well. Her counts just do not stay up for too long after treatment.

Her count was 8 about 3 weeks prior to starting. There was a slight delay in starting treatment waiting for pre auth. and waiting to see if she was a candidate for a study on Promacta and ITP symptoms in children (she could not participate since she was already 18, to her disappointment). I am sure her count had dropped since it was checked, her symptoms were much more pronounced in the week before we started.

The plan for now is to keep her at the same dose for another 7 -10 days, even though her count is in a range to decrease the dose. One hematologist in the who participates in ITP studies said that in kids when the levels climb rapidly if they cut the dose quickly they tend to drop very quickly. I would imagine at that point she will probably have the dose reduced. My only concern is that two of her liver enzymes are slightly elevated, I hope that is not a trend.

She does not have the overwhelming fatigue that she had in the winter but she still gets tired easily. I hope that this will get better as time goes on. She was an extremely active child (prob borderline ADHD). As time went on she calmed down, but still seemed to have a decent energy level. This all started because of fatigue, I thought her thyroid was the issue. She is trying to get back into shape, but when she exercises it wipes her out. I honestly don't know why. My son is a whirlwind, so my comparison my be off. I also think that 2 of her friends are pretty high energy so not a good comparison. I guess time will tell, but I really hope she gets a little of her energy level back!

That's great, Terri! I'm so glad it's working for her. What dose is she on?

Hopefully, the doctor knows what she is doing and will get her counts in a perfect range soon. Keep us posted; definitely an interesting story for us to follow!

She is on 50mg daily. I hope the doctors know what they are doing also! So far they have been pretty much on target, and I do feel confident that they are pretty current. I am glad that other than rescue they bypassed other treatments and went for TPO. They always give me reasons, studies theory for the decisions they make. They are also pretty upfront with saying they don't know something. When I talked to the doctor yesterday he went through the usual treatment protocol and then explained why they were deviating from it. And since she is a basically healthy 18 yo (APS neg) I am not overly concerned about blood clots so I am comfortable with the treatment plan.

My biggest concern is that if she needs to stop taking it for some reason her production would be decreased causing her platelets to be even lower ( although I dont know how much lower they could be), or that 15-20 years later there will be an incidence of bone marrow cancers associated with TPO use. But only time will tell...

Terri:

I'm at a point that after watching ITP people this long, I'm starting to think that TPO's in the beginning is not a bad way to go. Why put people through a long list of treatments, side effects and expense when the TPO's work most of the time.

As for future side effects, Rituxan has only been around since the late 90's, so even that has a long-term unknown risk. The other treatments have risks as well when they are used over and over as is usually the case. You can only do what you can do.

I meant to also say though I realize that titrating medication doses are for the most part tricky. I have seen challenges numerous times for things simple as BP medication to more complex meds like insulin and blood thinners. Some people respond easily within the normal range and others are all over the spectrum.. Fingers crossed for easy!

I also realize how lucky we are that she responds to treatment. As much as I wish she had no problems, there are so many things out there so much worse, our young adult god daughter has been battling severe depression and titrating her meds is not easy!

Terri:

Somehow, I don't think that configuring Promacta will be that difficult. If the dose is changed carefully and slowly, it should go fairly smooth. As long as you don't react and try to over-correct every count change, hopefully all will go well.