Drop in platelet counts BEFORE tapering Pred

We're confused and frustrated and not sure how to make sense of what's been going on with our little girl lately. She was diagnosed with ITP 3.5 years ago, but this past year has definitely been rougher as it seems to have ramped up.

She's been taking daily prednisone and actually responding these days, which is a huge relief to us because she is so so resistant to everything. However, after less than 10 days on the steroids, her platelet counts have already begun to drop and we hadn't even started the taper yet. Is this a common thing and has anyone else experienced this?

On a side note, we had our consult with the surgeon this past week to discuss splenectomy. While we realize this is a treatment option we may land at soon, we've decided to hold off until at least the end of the year. I still want to give the Rituximab a chance to kick in, even if the hematologist is less than optimistic at this point.

on 2/11 I started Prednisone at 20. 6 days later I was at 27 and then they just went down from there. I think it's a pretty "normal" thing.

It looks like our girls were diagnosed at about the same time since Caitlin has also been dealing with this for about 3 1/2 years. We've had a rough year too, but it finally calmed down, thanks to Nplate. Rituximab also didn't work for Nplate. Caitlin's counts were in the 10-20 range for a few months after Rituximab and then they started Nplate, which gave her high doses. (2nd time on Nplate...first time, we went to the max dose and we were not getting great counts.) This time, however...we think due to Rituximab, she is having a GREAT response to Nplate and she's still on the minimum dose. I would strongly recommend seeing if this is an option before heading towards the splenectomy route. (I am sure glad I did!)

I am on 10mg daily and mine seem to go up and down like that, 4 weeks a go they were 12, then two weeks ago they jumped to 30, so yeah it is most likely a normal occurrence

It looks like there is some sound advice going on with this thread. As I have shared, my daughter (9 years old and diagnosed 6 years ago) did have a splenectomy. While I had said we would NEVER do it, we got to a point where we could not manager her bleeding. It truly was a "back against the wall" decision. Prednisone had been working, but all of a sudden she was not reacting to it well. Our experience with Prednisone is that sometimes it was amazing and sometimes it was not any help. There was no black and white results, but, that is kind of how the ITP thing is. While all of this advice is just one families experience, I have learned that certain things may work once, and not the next time, than work again, etc.

Stay well

Hey there, looks like u have been around the block with treatment options. We are in our month. Have had 2 ivig rounds but seem pointless due to sickness and lack of sustainability. When did u start nplate and is that where u get the counts of 50-60. what were u on when you had the counts over 100k? At this point 60k looks wonderful...

Jay...you have that right! What works for one child may not work for the next child. I made the mistake of doing that in the beginning and having the wrong kind of expectations just because something worked for one child. Caitlin cannot go down the splenectomy route because of other things going on with her, but if her immune system was completely normal, it is something we would consider just to have some "normalcy" in our lives and be able to forget about ITP altogether. Nplate does give us this sense of normalcy, but there are times where we almost forget that we have to give her the shot because she is doing so well. (As long as I don't look at the bruising, it's good!) Caitlin was a bleeder (daily nosebleeds that would last for an hour or longer, blood blisters, gum bleeding), but for some reason or another...it stopped (when she turned 9) and she only has occasional bouts with bloody noses/petechaie and we are so thankful for that!

kmcadams-Caitlin was on Nplate for 2 years and had worked her way up to the maximum dose. It was during that time period that she had a few counts over 100K. Nplate's target is to keep the count around 50 or higher, but not too high because the platelets are all brand new and large. Caitlin had to go off Nplate for a few months due to reticulin and then we decided to put her back on because her counts were staying below 20. They started her back on the maximum dose and her platelets went into overdrive and she was having counts over 400, which wasn't good for her either. After about 6-7 weeks of this, the dr said "enough is enough" and dropped her down to the minimum dose and she's been there since the end of June and she's doing great! For Caitlin...I am ok as long as her count is at 30 or higher because she has enough platelets at this point to keep her from bleeding.