I'm a new member with chronic ITP

Hello everyone, I am new to the PDSA. My name is José, I am a 29-year-old male, I've had chronic ITP since I was 13, they remove my spleen at ages 15, after 19 years old my platelet count was between 30,000 to 40,000. Back in June I got really sick and my platelets just drop down to 1000 with bleeding from my nose and bruising. I have tried bunch of medications and a lot of them didn't work such as IVIG, Promacta,Rituximab and Prednisone. I am currently going to Georgetown University Hospital in Washington DC, I was on a clinical trial. The study is called " The Safety, Tolerability,and Pharmacokinetics & Pharmacodynamics of Multi-Dose TNT009 in patients with chronic ITP" It's supposed to be a 26 week treatment however I got two doses of the medication and I did not respond at all, anyone with chronic ITP reading this my want to talk to their hematologist about this. Well I just wanted to give a quick introduction of myself and I hope I get to meet a lot of you guys, thank you for taking time for reading this.
#ITPWarrior #LetsBeStong #LetsStayPositive

Hello Jose. How are your counts now?

hey Sandi,my last platelet check up was on Monday, i was at 1,000. yes extremely dangerous. I went home with 30mg of prednisone till Friday. Im not a fan of staying at hospitals just for regular transfusions. Plus a lot of meds haven't been working on me.

Jose, I found a study on TNT009 but it wasn't about ITP. It was about Cold Agglutinin disease.

Are they putting you on Prednisone because it helps a bit? Perhaps enough to stop symptoms?

Is the doctor thinking about Nplate next?

Are you getting platelet transfusions or IVIG?

You have to google " The Safety, Tolerability,and Pharmacokinetics & Pharmacodynamics of Multi-Dose TNT009 in patients with chronic ITP" .... there is a page about ITP patients

As of right now it's strictly prednisones till Friday, depending on my counts, I might get IVIG, but the medication will not last long in my body so we will see what other options they have for me .

So you are out of the trial after only two infusions?

Yes i am, because we did not see any results at all, so my doctor said " we are done with it" 2 others responded very well with in 4-8 hours, i wasn't so lucky

Some doctors give up on treatments way too quickly in my opinion. It might have taken you three or four weeks. You can't compare yourself to others when ITP is involved.

Many people here have had Rituxan. It can take anywhere from 4 to 12 weeks to work. We have seen responses all over that timeline. We're all different.

I completely agree with you about some doctors giving up pretty quick I told my doctor if we can go longer she said no because others have responded well but you have not. A few you years ago I was on Rituxan for I think 2/3 months and we didn't see any results. And yes everybody's body is way different some respond better to a certain medications than others

Hang in there. You'll find something that works. Sometimes it takes a combination of drugs.

Thank you very much!! ☺️

Welcome Jose,
I'm a fellow member of the long-term ITP club along with you. I was diagnosed around age 8, had a splenectomy done at age 9, and have been dealing with ITP my whole life until now (I'm 42).
I'm also in the DC area, so we're almost neighbors. I've been seeing Dr. Kessler over at the Lombardi center at Georgetown and he's awesome. Luckily for me I've been having a relatively good run with Promacta and my counts seem to be mostly near the target count of 50,000.
I'm sorry to hear that you are such a refractory case, but it sounds like you have a really positive attitude, which helps when dealing with this kind of thing. Hopefully your trial will help and you can get some better numbers without too much toxicity!

Keep posting and we can all benefit from your experiences.

Good evening, Thank you for welcoming me, i'm currently seeing Dr. Catherine Broome at the Lombardi. Unfortunately the clinical trial did not work so she stopped it, I only received two doses of it and we did not see any response at all, last Monday I was at 1000 but Dr.Broome sent me home with 30 mg of prednisone, i'm going back for a platelet check up tomorrow in Georgetown in the late afternoon. I am really glad the Promacta is working for you, 50,000 is amazing number, I hope they stay high. Thank you for your support and you will have my support as well. No matter our situation we have to be positive and remain strong.