Newly Diagnosed

My Husband was Dx 18 days ago and he has had Platelets, Steroids, IGG and nothing has worked....is this common. His platelet count was at 3000 when he went into the hospital and has gone to 19000 once but has stayed around the 10000 t0 12000 range.

Platelet transfusions will not work for ITP since they are destroyed almost as quickly as they are infused. Some people do not respond to steroids or IVIG and in that case, there are other treatments that can be tried. Have you seen the treatments page on the site?

The only thing common about ITP is it's different for everybody. I had zero response to steroids, pulse or 20 weeks of daily pills. Didn't respond to 5 treatments of anti-d (Win-Rho) and Ivig didn't really accomplish much and platlets worked for about the typical 2 weeks (the first two times then it too got shorter). That's the hard to believe part of ITP - what works for one doesn't necessarily work for another and there's no way to know until you try it. It's truly a test in patience and management of expectations. I wish I could say those are easy tasks but I failed quite nicely on both fronts! :S

Know that we're here 24hours a day to answer questions, listen to rants and offer support as best we can. We know it's a roller coaster of MD visits, lab tests/results, Rx changes usually surrounded by fear and anxiety. Ok, so that's the bad stuff but... this group of people are truly amazing! I believe some have better ITP knowledge than many MD's!!! I KNOW they're more compassionate than many MD's!

So post often, post questions, concerns or fears - we care, we share and we educate.

How about sharing some more of your husbands journey so far, when did it start?, what tests have been completed, what Rx tried (beyond what you've already mentioned)? Does he bleed (nose, gums) [my platelets were 0 but no bleeding unless I cut/bumped into something]? Is he still on steroids - those side effects (sleeplessness, irritability, hunger) are legendary?

I too was newly diagnosed with ITP, my platelets sat at 1,000 for over a month. I have gone thru two different types of steroids (Prednizone and Danizol), 4 IVIGs, Win-Rho, 4 doses of Rutuxin as well as had my spleen removed. I was told there were only two more types of drugs they could try. I was very fearful that neither of them would work and then what - wrap myself in bubble rap and never leave my house for fear of bumping into something or falling.I was then given NPlates and after 23 days in the hospital and after my forth treatment my body finally started to responded.

As others have said you must be patient and go along for the ride. Your husbands body will eventually respond to one of the treatments. I understand the feelings you must be having, there were days in the hospital that I was not so patient but then I realized I survived yesterday having only 1,000 platelets, I will survive today as well! I had to stop thinking in terms of platelet numbers and start thinking in terms of how I physically felt. I felt "normal" so I was going to act "normal".

I am now 2 and 1/2 months into the journey and I am riding that roller coaster of platelets going up for several weeks after a NPlate treatment and then falling. It is frustrating but a positive attitude and knowing that I am not alone helps. This website has helped to provide me with that positive attitude, just knowing that there are others out there that have been thru what I am going thru and are willing to share their stories.