Promacta (eltrobopag) Not Working - Please help?

My son is 17 and this is his 3rd diagnosis with ITP. In 2013 he responded well to IVIG and steroids. In 2015 it took a little longer but he again responded well to IVIG and steroids. His most recent diagnosis was Sept 2017. His #'s are often in the single digits. He is not responding to IVIG or steroids so we started Promacta (eltrombopag) 50mg. He went up to 46K platelets but then declined to a platelet count of 5 in 1 week. We changed him to the max does of 75mg and his platelets spiked to 96, then 87, then 46 and now 7 as of yesterday. These #'s are just over 1 week so he declines rapidly. So, it appears he's not responding to Promacta which has a 95% success rate. During the past 6 months the physicians have done tons of testing. His IG levels are extremely low so they are thinking he has CVID (commom variable immunodeficiancy). We have one lab to get back but they are thinking of starting weekly home infusions of IVIG for his IG levels. Although IVIG did not work for his ITP they are confident it will work for CVID. I'm wondering if anyone out there has CVID and ITP and if so, once your IG levels increased, did ITP go away. He is 17 and is an avid soccer player and skier. Needless to say, with platelets in the single digits, he cannot do anything. He's had bouts of spontaneous bleeding this time which has never happened in past ITP episodes. It seems as if this round of ITP is much worse than it has ever been and he's just not responding. Also, did anyone else try Promacta? Did you increase and fall again? Did it eventually work? I'm stressed and sad that I have a child I cannot fix. Any and all suggestions welcome. He did have a bone marrow biopsy upon initial diagnosis in 2013 and that seemed fine. Did anyone else not respond to Promacta but then switch to N Plate and have results?
Thank you so much

Hi- It must be very hard having a child with ITP. I've often thought I'm glad its me and not my son. Hope you find some answers and remission for your son. I don't have CVID- hopefully someone with information will chime in.

I do know of people on the forum who have failed one of the TPOs (Promacta or Nplate) and then found success with the other drug. So its really worth a try. I have been on both drugs over the years. I'm on Nplate now, its is my favorite treatment for ITP so far. I have no side effects from it and it does the job to keep my platelets around 50 or higher.

Several years ago I was on Promacta, started on 25mg which did nothing at all. Went to 50mg and my counts responded. Next year I tried 25mg again and my counts went right up. So things can change. Its important with Promacta to take it on an empty stomach and not eat anything for an hour, 2 hours? No dairy within 4 hours? Sorry I can't remember exactly the guidelines, but I took it in the middle of the night to avoid any food interference.

You said hes having more bleeding issues now, I wonder why that is? Lower counts? Or has he had a change in diet? I don't know if diet would effect his bleeding. I only know from my experience that if I take Omega 3 vitamins I will get bruises all over my arms. A medical student explained to me that its because Omega 3 softens the blood vessels. Also I read on Johns Hopkins website to avoid garlic if you have auto-immune/Lupus issues- it stimulates the immune system. So I still eat garlic but am aware of the warning. I don't take echinacia, herbs- there is a list of foods on the PDSA website. I take Vit C which is supposed to strengthen blood vessels. I'm not a doctor- just throwing out some ideas which might be helpful. Best of luck to you!

I have a combined immune deficiency and ITP. I use immunoglobulin every week, infusing subcutaneously myself at home. It makes my IgG level normal but no, it doesn’t help ITP. I still have that. I got into a sort of remission with counts around 80 after using Nplate for 3 years but I have had relapses occasionally when I go back onto the Nplate for a while. Good luck.

Great info. Thanks so much

Hi anon, that's what I was afraid of hearing, that treating immune deficiency won't help ITP. I'm so glad you commented. Thanks for the info and I wish for continued improvement for you.