I'm so scared about this!!

Hello, On Friday 10/21/2011 i went to the dentist and got a cleaning. that night i kkept spitting out blood. the following day i noticed bruises and still blood in my mouth. I went to the emergency room platelets were 2000. Admitted that evening i was given intravenous steroids. Two days later 100mg daily of prednisone by mouth. prednisone was doing nothing at that time except making me miserable. Platelet levels are never higher then 9000. I had IVIG on 11/1 and 11/2 my levels go up to 101,000. Iam dicharged 11/3. Taking 80mg daily of Prednisone. Today went to Hemo for follow up levels are at 427,000. Starting 50mg of prednisone daily tomorrow. I know i should be so happy but EVERYTHING I READ says this is temporary. I am getting married on 11/25. I am on weekly visits to the Hemo. This prednisone is horrible.. I read a lot and since taking this i cant concentrate on reading.

Hi there..you've come to the right place. It's normal to be scared at first and the timing for you is horrible with the wedding coming up!

The best advice I can give you is to try and go with the flow. You'll be okay. ITP can be a lot of ups and downs, so you have to be prepared for that. Dying from ITP is very rare, even with low counts, so try not to worry about that. You do have a treatment that works, so you are able to get counts up if need be.

As far as the Prednisone side effects, they can be nasty. Most of us have been there. As hard as it may be, try to keep life as normal as possible. The mistake I made when I was on Prednisone the first time was to take myself too seriously. It's much easier if you try to laugh at yourself and find some humor in it. You're probably thinking I'm nuts...but really, once I did that, life got a little easier.

One of the hard things about the diagnosis and the side effects is feeling like you've lost control of your life. It can take some time to regain that sense of control, so cut yourself some slack there.

Your counts are great right now, so try to enjoy them. Take one day at a time and believe me, some day you will look back on this and realize that it wasn't as bad as you thought it was. ITP can be acute for some people, so you do still have that hope. If it's not, it is something that you will learn to manage. Most people reach some sort of remission eventually; it just takes time to find the treatment that helps that along.

Any questions - we're here!

The timing, platelet counts, and response to IVIg is very similar to my situation. I just posted my story in a new thread. I also bled when I had my teeth cleaned at the dentist's office back in mid-August. The dental hygenist asked if I had a bleeding disorder and I told her no. Maybe it was already there back then 2 months before diagnosis.

Everything I read says that IVIg is temporary too. I've got way more info online than from my Hematologist, and he wasn't even familiar with the studies that I asked him about in regards to other treatments and different types of anti-platelet anti-bodies. I called Northwestern Medical Center in Chicago to get an appointment with an ITP expert, but they can't get me in until Dec. 27. Until then I am glad I found this forum. Our cases seem very similar and I certainly want to know how yours turns out along with any other information you want to share about your ITP experience and possible causes. Good luck to you and everyone else who is dealing with this.

Hi,

Take it slowly and read here for more information, many many many (yes, i need to repeat this three times) people living with itp are living a happy life with good quality after understand more about their condition and treatment.