Counts are back down

My daughter had her bloodwork repeated this week. She received 2 high doses of SoluMedrol with IVIG in the middle then 3 weeks of prednisone in mid February to early March for a platelet count of 1 and GI bleeding. Her platelet count March 23 was 379 (2 weeks after she completed the prednisone). We though her count might have been starting to drop but I was really floored when the doctor called me yesterday and told me it was >5 again. She has mild bruising and fatigue, but no petechiae. I thought her counts were in the 30 range because the symptoms she is having now are comparable to what she was having last year when her counts started to drop. In the fall and winter when her counts were this low she was really bruised, gums bleeding with brushing, petechiae from head to toe and her lips were cracked and bleeding. I am pretty upset that her counts are that low without really having symptoms (which may not be completely rational) since I know to take extra care when her counts are low. The doctor says her counts may have just started to freefall and the symptoms will probably catch up. I am waiting to see the lab report itself (Labcorp usually releases them about 72 hours after reporting them) because it is just kind of unbelievable.

He feels at this point we should consider treatment since she drops so low and has had 2 bleeding issues thus far. I pretty much agree, but my daughter is not really thrilled. For now I am walking the tightrope, trying to hold off starting treatment and side effects til school ends but hoping that she has no problems since she is starting a pt job and has prom and graduation coming up. I will give it a couple of weeks to a month to decide.

Sorry to hear that, Terri. I was hoping for better news. Not having symptoms is a good thing and sometimes the longer counts are down, the symptoms get worse, especially if it was a fast drop.

Good luck with the treatment decision. Do you have any thoughts about what you'd like to try?

Typo, I meant her counts are <5. And I am glad that she is basically symptom free but it makes it tricky to evaluate. On the other hand though this is a kid who never followed the expected path

I think the doctors are leaning towards TPOs. They do not like steriods for extended periods of time, too many side effects. Her primary hematologist wants to talk with one of the other doctors in the group, and I am not sure of treatment protocols so I want to read up a little so I know what to ask.

That's not a bad way to go. There was a teenager here a few years ago who used N-Plate for a while (a year or two) and eventually ended up in remission. She was a cheerleader (flyer) and was able to keep participating. It worked out very well for her.

Thanks Sandi that is good to hear. And Labcorp posted the results, it definitely was the bright red <5. I am still pretty much in shock because thankfully she looks so good and other than some fatigue (not at all the horrible fatigue she had last summer and late fall and winter) she feels pretty good.

I would love insight about the pros and cons of Nplate vs Promacta?

I have never used either of them, but here is what I know.

N-Plate - once a week injection.

Promacta - once a day pill. It has some dietary restrictions.

www.proactiveplanner.com/dosing-scheduler.html

Ha, that's not very much, is it? They work a bit differently, but the result is the same.

Hopefully the doctor knows how to dose them. Some doctors try to chase counts by adjusting dosages and that usually results in counts all over the place with extreme highs or lows. The doses should be adjusted slowly to acquire stability.

I was NPlate for about a year. Unfortunately, we have no real way of knowing whether it really did anything for my platelets or they just stablilized on their own, but they were between 50,000-100,000 for a year before they dropped. (This was two years ago).

To be honest, I experienced no side effects on the N-Plate. It was just a pain to have to go in every week to get the shot. There is a very strict protocol that is set out about not getting your platelets checked and the dosage you are given each week. My hematologist and I both had to sign a paper stating that we would stick to the protocol (at least that's how it was three years ago when I started). Besides that, it was fine and platelets were up for a year.


P.S. we did it because I didn't want to do Rituxan. Which I eventually had to do, and I am currently doing (having a rough time of it right now

Thanks for your response tgurin 12. I appreciate the feedback.

My daughter wants to push ahead immediately with treatment. She still feels and looks pretty good and she is hoping that if we start treatment and she responds it will keep her from feeling as bad as she did this winter. I was holding back from making too many changes because she has so many big things coming up but in general I tend to go slowly so I agree she is right. I am sure it will take a little time to get things into place with insurance, etc so I am going to call the doctors tomorrow to start things rolling. I also want to hear whether they recommend NPlate or Promacta. I have heard more about NPlate (especially in younger people), but that is very limited knowledge.

Hello, My teenage daughter has had ITP for a little over 4 years. Left untreated she has counts <5 and bleeding issues. She did not respond to steroids, rituxin. IVIG only lasts about 10days to 2 weeks and causes her SEVERE headaches, nausea, vomiting. She is currently in a pediatric Nplate study (since last summer). Doing well for the most part....has some abdominal pain and headaches. Side effects have been tolerable for her. Counts have been 40-50K now for the last couple of months. At long as her count is above 50K then I am able to give her her injection at home with only monthly visit to the hematologist. Good luck if you decide to try Nplate!!