No Decadron for Danica this week

Her count was 4 today, so her hematologist ordered 30 grams of IVIg. He would like her count to be between 20 and 30 when we start the Decadron.

We will go in next Monday to start the Decadron. Her count should be around 30 - 40 I figure. He ordered it for three days, and a fourth if it is needed.

Michelle - mom to Danica

That sounds a bit like me, but the other way around, my count at first was too high to start the nplate, so we had to taper off the pred to make the drop to under 30.

Angel85 -- how high was your count? I am a little confused, why did they start you on nplate if your count was up?

Sorry - I don't know much about the nplate, and was just wanting toknow. Are you still on it? Did it work for you?

Michelle

I'm in this program where the drug company pays for the treatment and they have to document everything because they are trying to get it on the pharmacutical benefits scheme. I have to be under strict conditions to be in this program and one of the as my platelets had to be under 30 and they were 80 when we wanted to start it, so we had to drop the pred quick so the platelets would go down so I could start it. I have only had it once so far do not sure if it has worked. I have a blood test on Friday, i'll let u know if it works

interesting -- did you notice any side effects from the nplate?

how long did it take for your count to go from 80 to 30?

I have noticed a few little side effects, bit of joint pain here and there and tingling in my feet and hands and i have had a few migraines this week, not sure if the nplate has anything to do with that though, i tend to get migraines when i over do it on chocolate and caffine and i have had a bit of both over the last few days.

It didn't take too long for them to go down. I went from 40 mgs down to 20mgs and they went from 80 to 34 and then we dropped from 20mg to 10mg for 3 days and then 5mgs for a week and from once i was on the 5mg my count went right down to 9, then for 2 days i went to 2 and a half mg before i stopped the pred completly.

I tappered quite quick though, i went from 40mg to 20mg, then 10mg after 3 days and then 5mg after another 3 days. The platelets tend to dropped realy quick if you taper quickly and he wanted them down quick so we could start the nplate. I didn't get many side effects from tappering it fast though which was lucky.

Hi Michelle

Sorry to hear that it didn't go as planned. It seems like an exact count like that would be a difficult thing to achieve, so I hope that Danica hits the right numbers next week and all goes to schedule.

Ali

I'm sorry to hear she didn't get to start this week. I know how hard it is to wait to get the next step going, hoping this is one step closer to remission!

I am really sorry to hear that she keeps dropping down to such low numbers too. Caitlin drops, but she rarely ever goes into the single digits. It's amazing that Danica continues to be able to "tolerate" IVIG so well! (Unless I'm mistaken on that!)

Danica tolerates the ivig very well. she was getting headaches and had trouble breathing when she was on the other stuff, but since the switched her to Privigen, she has had no complaints.

I am expecting her count to be around 40 on Monday. If that is too high, then we will have to wait until Tuesday to start (she drops an average of 20K per day).

I will take her blood on Monday morning, fax it to the city, and the nurses there will talk to her hematologist to see what he wants to do.

It is actually really good that we did not start this week, because she has a terrible cold, and supressing her immune system might not have been a good thing.

Michelle