Newly Diagnosed with ITP

Hello everyone
I was diagnosed with ITP 2 weeks ago, and have been hospitalized since. My platelet count is currently at 3. Since I’ve been here my numbers been fluctuating. When I was admitted I was at below 1. I was immediately given 3 platelet transfusion the first day I was admitted, I also did the IVIG the first two days I was here... and still my numbers aren’t stable. They started me on the rutxan on Wednesday but stated that could take months for results. But because my numbers were dropping so quickly from 120 to 0 the next morning.. they started me on Nplate Thursday... I’m freaking out....

-Also I got a bone marrow biopsy a couple of days ago and is suffering from throbbing pain, and I’m so afraid to take any medication for the pain.. I’m so afraid it’ll affect my platelet counts being its already really low. The Dr offered me tylenol and norco for the pain... the tylenol doesn’t take the pain away... what I’m asking is because narco is a narcotic is it safe to take for the pain without lowering my numbers.

Please help.

Hi. My first question would be to ask if you have any symptoms....bleeding, bruising, petechiae? The main thing to know about ITP is that the numbers don't matter as much as the symptoms do. If symptoms are not too bad, many people are not hospitalized no matter what the count. Some doctors will do it as a precaution, but many do not. Try to stop freaking out....ITP can be scary at first but most live perfectly long, normal lives. It just takes time to find what will work and adjust to it.

Platelet transfusions do not help to keep the counts up when one has ITP. I'm not surprised that didn't help. IVIG is a very temporary treatment and usually only lasts days or a few weeks. It's a band-aid. Rituxan can take at least four to twelve weeks to work and it doesn't work for everyone. N-Plate is probably your best option right now and it can work fairly quickly for some. The goal with N-Plate is to keep platelets around 50k....counts should not go too high due to the risk of blood clots.

It should be okay to take Norco with ITP. I've been taking it for years and it doesn't affect my counts at all. Tylenol is one of the ingredients in Norco so you shouldn't take both at the same time.

Hello Sandi,
I am 26 years old and this is all new to me, as dumb as it sounds I didn’t even know what Platelets were. But I have been doing a lot of research since I found out. To answer your question yes I had it all I was bleeding through my nose for 2 days. The first day was pretty light, but the second day it got worse. The blood sores in my mouth started on the 2nd day within 3 hours it grew from a size of a pimple to a quarter. I also noticed the bruising all over my body as well as petechiae on the 2nd day.

That explains Ive gotten 14 transfusions total when I was admitted and it would just drop back down the next day. After the Rituxan I was at 0 for 2 days and started bleeding out the nose and urinating out blood... so again they transfused me with more platelets and 2 days later started me on the Nplate. Took about 3 days for it to kick in but I am finally seeing some real results. I am currently at 193 counts. I have my second treatment for Rituxan tomorrow. The Dr. wants me to complete all 4 treatment. That isn’t dangerous is it, with blood clots forming? He did say if my numbers were back to normal we would stop the Nplate injections.

Its flu season and there are people left to right that are sick. Because I’ll be getting the Rituxan will that make me more vulnerable of getting sick?

Did you also get a bone marrow biopsy? Its has been a week since I’ve done mine, but I'm still experiencing throbbing and sharp pain going down my right leg. Especially around bed time, Is that normal, and will it fade away over time?

Its has been so hard to adjust being that ITP is always going to be in the back of my mind and that there is possibility of relapsing... I really appreciate you replying and putting me on ease. Thank you so much!!!!

Since you have bleeding, it's probably best to be in the hospital. You may be having more pain from the biopsy because you are in bed and not moving around a lot. Most likely, you're lying or sitting on the area where the biopsy was. It should get better the more you walk around. Yes, I had a bone marrow biopsy and had trouble bending over for a few days, but I don't remember it throbbing.

It's hard to say whether or not you're at risk for a blood clot. It's a tricky situation. Some doctors start throwing too many treatments at patients and then they end up with two problems. One, you don't know which treatment is working and two, counts end up going higher than they should be. As weird as it sounds, ITP can also be a thrombic disorder for several reasons and some patients are more at risk than others.

You might experience more ups and downs of counts as N-Plate wears off. It generally only lasts a week and is temporary. People who treat with N-Plate get the injection weekly, or it is based on the count. We've had a few people get a Rituxan response after the first week but that is very unusual. If your counts stay up, that would be due to Rituxan. If they don't, you have the option to wait for Rituxan to kick in or get another N-Plate injection. It's not quite time to start worrying about a relapse because technically, you're not in remission yet. Remission means that counts have stayed in a safe or normal range without treatment for at least six to twelve months. You are responding to treatment but that doesn't mean it's over yet.

Rituxan is an immunosuppressant, but most people do not get sick more often after they get the infusions. You are obviously at risk if you are surrounded by sick people though. Be sure to take precautions like washing your hands often and don't touch your eyes if you can avoid it.