Roller coaster ride with my son

Back in April of last year my then 19 year old son was in a car accident, he had some major bruising but we figured it was a hard hit. then in mid may he stated with a nose bleed that just wouldn't stop. They tried cauterization and that didn't help .. fast forward a few weeks and we were in the er again for a nose bleed. ( basically 5 weeks of constant bleeding) An ENT Dr was passing by and asked if anybody had pulled a CBC. Well they had not. 30 mins later the er staff was telling my wife that she had 10 mins to figure out where she wanted my son transported to. ( we live in a smaller community in central mn, the hospital we have close wasn't able to provide treatment) found out his count was at a 1. Well since June 9th we have been up and down all over the board. We have done prendisone, nplate, ivig, retuxin ect, and Splenectomy. we are now on Promacta. And we have transferred his care to the Rochester Mayo Clinic in MN. They are diagnosing him as refractory ITP. We started at 25mg of Promacta in Early Jan but had to bump up to 50mg as his numbers kept dropping. It seems like he only responds to the IVIG. He did have a slight spike in his numbers when we did the increase from 25 to 50 mg. since the first of the year his numbers have been 465 345 235 97 4 171 412 648 534 169 7 93 340 175 286 459 305 83. He goes in twice a week for his counts. the huge spikes are when he has needed the ivig. the last big increase was when we did the increase in the Promacta. I think this is more stressful on his mother and I then it is on him .

I'm going to ask the moderator to move this to the adult section - you will get more responses there.

J, what happened with Nplate? You were hoping for remission but all it did was raise counts while on the drug, or ?
Those are pretty extreme count swings. Can you explain why the dose of Promacta was not increased and IVIG was infused instead?

with the one Nplate shot he got his numbers climbed up to the 800k range, that was after an ivig treatment the day before. Due to my insurance company that said no to the shot. and yes the ivig treatments have been done due to the fact of his counts being under 5 at times when we end up in the hospital for a day. As for the promacta they wanted to start high but he went really high on his counts, so they dropped it and now I feel like we are playing catch up. I just seems like he isnt responding as he should be

That can sometimes be a problem with Promacta and N-Plate - doctors that do not know how to dose it and they keep changing the dose to chase the counts. That only results in wild swings in counts. It can take a few weeks or months to get stable on Promacta, but they have to start low and use consistent doses until they see a pattern in the counts.

Don't give up hope yet, but be sure you have a doctor who knows what he is doing.

J, ok. This is little hard to follow but it sounds like when counts drop down to 4 or 5 they give him IVIG because he has bleeding symptoms even though he is taking Promacta too, yes?
With the latest 83 I guess counts are now dropping from the last IVIG and will soon find out if 50mg is enough to keep him out of the sub 10 range and away from symptoms. Am I close to understanding?
Are you sure they are not giving him intervenous steroids before/along with the IVIG? Some folks it takes both to raise counts.

they have tried both the steroids and the ivig. he does not respond to the steroids..when he drops low he does not bleed unless he is under a 4. as for the 50 mg he has been on that for 3 weeks now and it does not seem to be working . he goes in tomorrow for a cbc and i am guessing he will be under a 10, as he is getting petechia in his mouth and on his feet again

Ok. Hospital ER settings seem to prefer administering both steroids and IVIG. Infusion centers, not so much. Folks that respond to both are rather unique in what and how they respond. Just trying to see if that was the case here.

Tough situation. You know, sometimes Promacta isn't potent enough and folks have to move on to higher doses of Nplate. Also, although 75mg is considered the highest dose of Promacta, there have been some folks here where the doctor has put them on 100mg.

Has the doctor mentioned the drug Fostamatinib, aka Tavalisse? It's a new ITP drug but the roomer is it works in some difficult to treat cases who do not respond to steroids.