New to the group...

Hey All,

I am happy to finally post my story, but not really happy to be here as this means my ITP persists. I was originally diagnosed in 2004 with levels in the 2-3 range. At that time I was hospitalized, given a high dose prednisone taper, and within 4-6 months I was in remission until last year.

In Aug '09, while pregnant with my now 8 month old daughter I was hospitalized for heamolytic anemia. While in the hospital they also realized that my platelets were low again, and I was given the diagnosis of Evans Syndrome. Through the rest of my pregnancy I was on a moderate dose of steroids and maintained a 'decent' level. I don't remember what the levels were, but they were ok. Right before my due date in December my numbers dropped again, and I was put on Decadron 40 mg for 4 days. With that in my system, my numbers were good enough to deliver, and my baby was born!!

I think the doctors were hoping that my numbers would bounce back to normal after delivery, as they often do with pregnant women who have ITP, but mine did not. Since Dec. I have been on low dose prednisone which has kept my platelets around 40. They dropped on one occasion back in the spring but rebounded after another dose of decadron. In the past month however, I have had more bruising, petechae, minor nose bleeds, and fatigue. My numbers went down to 2 three weeks ago, and I was admitted for two rounds of IVIG and decadron 40 mg x 4 days. Levels bounced to 151 after the IVIG, but dropped back to 2 last week. My doctor and I decided not to do another IVIG (and therefore not be hospitalized) and just do another round of Decadron over the weekend. Today my levels are back up to 115. The current plan is to start Rituxan, 1x/wk 4 wks as soon as possible and as long as my insurance co. agrees. My body seems to respond to decadron, but I can't keep doing that long term.

Overall, I am doing pretty good with this weird illness. I, like everyone else, have my moments, many of which are steroid induced. It's kind of odd to know your body can betray you at any moment, but I know myself enough now to know when things are bad.

For now, the bruises are healing, and I wait to see if my insurance company agrees that Rituxan is the next best course of treatment. I'll keep you all posted!

Bindy

Hi Bindy, it's nice to hear your story. Sounds like you've got a positive attitude towards handling your ITP. I admire parents with children dealing with this disease (whether they or they child have it), because the treatment part and the ups and downs take a toll on us all, but you need lots of energy to keep up with the family. I hope that insurance will approve your treatment, and I hope you keep in touch.

Thanks Donswife. I try to keep a positive attitude about the whole thing, but I certainly have my moments of frustration. Just tired of dealing with it, and just tired in general. Thanks for the support. I'll keep posting.

That is the current treatment I am on also. I recently found out I have ITP. So far nothing has worked. Steriods, IVIG, Platelet trans., And now the chemo. Wondering how long of a process this is? It seems like quite a lengthly road ahead. I try so hard to be the positive thinker.
My 12 year old daughter has a real hard time with this. She is actually a 7 year leukemia survivor! So she understands alot about the blood disorder. But the sad thing now is that she now worries about me.

congratulations to your daughter for being 7 years free!!! No doubt seeing you dealing with this is bringing up some memories for her. The good thing with ITP is that it is really not all that dangerous. Low platelets always have a risk of bleeding, but I think you'll see that a lot of the people on here have learned their symptoms and know when to pursue treatment. I was in remission for 5 years before it came back, and I fully expect that once my body decides to respond to current treatment, I will go back into remission for a long time.

Hopefully as you get used to this diagnosis, and understand how your body responds to low platelets, you and your daughter will be able to see the differences between this and cancer, and hopefully that will alleviate some of her fears. She sounds like an amazing girl. Blessings to you both!

hello my name is kay and i know exactly what you are talking about. while i have not had itp very long i was diagnoised in april of this year i have been through pretty much everything treatment wise. it is hard when your body doesnt work like it should and nobody seems to know why or what to do to fix it when the standard treatments dont work. i am glad you are doing better. i just found this site today and it will help knowing i am not alone. take care and God Bless

It is tough ,but the gang is very supportive...keep the faith... and welcome