TPO drugs-high counts

I am posting on the adult side because there aren't enough children on it for me to get feedback. Caitlin just recently went back on Nplate and had high platelet response to it. Part of it is probably because they started her on the maximum dose for her weight rather than starting at .1 mcg/kg and working their way up. But, we're on the study so they're following protocol.

Anyways, Caitlin had a count of 10 when she got her dosage of .7 mcg/kg, which is her maximum dose. Her count shot up and she got a count of 402 last week. Because of the protocol, they withheld her dose. I thought for sure, her count was going to drop down at least to the 100 to 200 range, but I was so wrong. Her count was 674 this morning so they reran it and did a full CBC and it came back at 678. I know little increases/decreases mean nothing, but to go up that high without getting a shot seems almost weird, especially when we were trying different treatments to get her count up. Her highest count ever on Phases 1 and 2 was 135, but most of the time it was in the 50-80 range with some drops in between that brought her up to her max. dose.

They are now telling me I still have to watch for symptoms because her platelet count is pretty high and they could continue to climb for all we know. We are supposed to be watching for clots or any tingling or numbness and basically the same symptoms that come along with an ICH, but this time the result could be a stroke instead. This is very rare, just like an ICH so I am not going to worry myself to death over it, but I do want her platelet count to settle down a bit. I hope they are not all brand new and large platelets. Usually we don't get a reading for MPV because it always says "unable to calculate", but today it showed a number of 10.5. I hope that's good since I have no idea what the range should be.

For those of you that have experienced high platelets as a result of a TPO drug...have you been told to do anything? We haven't been told to do anything other than watch for symptoms and get her to the ER if she shows any symptoms. Did your high platelet count remain over a few weeks (after stopping) or did it drop immediately? So strange to be on the opposite side and I don't know whether to be happy about it or to worry about it or just forget about it altogether and let her play. (She's been extremely tired so I don't know if she will enjoy another week of high platlets. Her wbc was a little low today too, but not too low to be concerned.)

My time with Nplate has been just as odd. I worked my way up to the 5th level of dose, had one week break as they messed up and didn't have the drug, then started again and had silly high counts and have reduced back down the doses to the lowest dose. Maybe having the week's break in which I have to say I had a count of 1 with horrible bleeding, did some good. Now I seem to be super sensitive.

The highest count I have had is 447. Unfortunately the instructions we have for this study say to withhold over 450 instead of 400 so I had to inject that week too although we did reduce the dose. I then got a few weeks in the 300s reducing the dose again every week until I got back down to the lowest dose possible. I was then at 110 for two weeks and last week at 151. I hope I'm not going up any more. I'm self injecting the next two weeks so won't know for a while.

I wasn't told anything when I had the high count. It could have gone up even more for all anyone knew but nobody told me to watch for anything at all.

The normal MPV seems to be 7.5 to 11.5. I tend to be at the high end of that while on Nplate so high counts scare me. I'd really rather be at 50 than 150.

Ann...that is weird that your count is remaining at 150 even on the smallest dose! I hope to hear more responses just to hear some more experiences. It is weird to be on this end of the spectrum when she hasn't even had a splenectomy. Part of me even wonders if there is any possibility that her spleen isn't working properly. I don't know if that shows up in her labs.

My sister has thrombocytosis (too many platelets) and actually has to take drugs to kill them. One of her signs that they've gone too high is that her fingers and toes really hurt from the size or number of platelets going through the small capillaries in the extremities. Before they got her regulated on the anti-platelet drugs they had her take asprin since she's 30 miles from the hospital that could test and 120 miles from her hemo.

Pauline,
I'm sorry, I don't know what a tpo drug is! I am on NPlate tho. Is that one of them, I'm assuming it is since that's what your talking about in the post! I'm not having any problems with NPlate and my counts. I've been the high 300's until last Friday at 207. I'm happy with that....I guess! I am feeling super tired all the time though but I think going back to work is having something to do with that too. I dunno. I'm going off NPlate soon though because I'm starting Rituxan this Friday...hopefully! It think! Oh boy...the never ending emotions! Gotta love it!!

Server, Nplate is one of the TPO (thrombopoetin) drugs. The high 300s is too high for this type of drug. The reasoning is that all the new platelets being forced to be made are large and new and very sticky, so having a lot of them means they are likely to clot. The idea is to have a count somewhere round 50 but certainly not above 200.

Bunnie, that's interesting to hear about painful fingers and toes. Something for us to watch out for.

Of course when I tell Caitlin to tell me if she is experiencing any tingling or any weird symptoms, she tells me she has been having tingling every single day in her arms. Then she goes on to tell me that she feels like she is going to black out every once in a while when she is just sitting in her seat at school. Ugh! Caitlin tends to overexaggerate some of her symptoms (I think!) so it is hard to tell if something is an emergency or if it is just "normal" since her platelet count is high. I finally emailed the dr, but I told her exactly what I said above and asked if "waiting" until she is in obvious pain or acting weird would be taking a risk. I hope I don't end up taking her to the ER today because of the symptoms I described to the dr. Caitlin also said that the top of her left foot really hurts where her vein is. I think it is very rare for children to experience clotting, right? I have probably made about 5 trips to the ER since her ITP diagnosis and only two of those times did I feel like it was warranted. The other three times, the dr told me to take her straight to the ER and I was so hesitant because I knew she was ok and she was.

Bunnie...thanks for mentioning the symptoms too. Caitlin hasn't said her fingers or toes hurt.

Pauline:

It is rare for children to experience clots, but it wouldn't be as rare for Caitlin due to her medical status and medications.

I know what you mean about going to the ER unnecessarily and that's a tough call. Try to ask her what she means by "tingling". Is it "falling asleep"? Is it burning? Is it pins and needles? Numbness? Just the fingers or hand or the whole arm? Finding out the answer might make a difference.

She said sometimes it's pins and needles and sometimes it's numbness. Last night, during her cheer class, she ran out and said her left arm felt funny and it kind of hurt. I allowed her to go back in and watched her closely. Within about 15 min, she was tumbling again. That really scared me and I was about to take her out and head to the ER last night. Caitlin won't tell me her symptoms until after she's had a class bec she doesn't want to miss anything. But at the same time, I have to think that if she were in alot of pain, she'd forget about going to the gym and stay home to rest. There have been days where she has been in the ER or been very sick that day and still begs to go to the gym at night. This is frustrating...I just want her count back down now.

I have had pins and needles and sometimes numbness in my feet and hands, i think that is a side-effect of the nplate was well, so it could be from the Nplate, not from having too many platelets.

I have the numbness and tingling in my ankles and feet. It gets quite bothersome! And my left foot hurts on top too, a lot. I get swelling too and a small red splotchy thing just above my ankle but it goes away after a day or 2. And the blacking out thing, I've had that too. It's the weirdest feeling, kinda scary!

Angel - Those symptoms could be from having too many platelets too....they can be symptoms of a stroke. Of course, you'd also want to look for other signs...headache, vomiting, slurred speach, droppy face, inability to raise arm(s), etc.

I know and she shouldn't not count that out, but it could also simply be from the nplate, particulary if she was put on the max dose straight away. I get more side effects as I go up in doses.