I am so confused! How does this happen?

I am new to the ITP family and my oncologist has been my new best friend for the last year. He says that I will have this forever and there is no cause or reason. "am only 28" is all that ran through my mind as I am sitting in his cold, white walled room. What about my kids, can they have this? All sorts of questions ran through my mind. Yesterday my platelets were at 16K , the lowest they have been since my diagnosis. When they fell to 27K, I began a seriers of steroid infusions. It looked hopeful as the went up to 138K. Less than a week later they dropped to 26. Everyday they have dropped, now I am taking an oral steroid. So what's the next step for a longer duration? I want to avoid getting a splenectomy at this point because of the risks and lack of other methods. I am just so confused! How did this happen?

Have you read over this website, there is a treatment page and lots of information. That is your first step. There are many different treatments!
Erica

Unfortunately, theres no explanation as to how it happens.Thats why its called an auto-immune (idiopathic) disease.
Yes, you will have it forever, but, it can go into remission and never rear its ugly head again. At least thats what my Dr told me.
Its not genetic, again, thats what I was told, so your kids are (probably) safe.

You Dr can give you options as to the next treatment. Mine opted for Rituxan, and so far, its working. Though its only been six months since treatment, but, I take it one blood test at a time. As should you, or youll drive yourself crazy trying to anticipate what will happen next.

Be your own advocate and ask as many questions as you can think of. In my case, knowledge was (is) power. You may feel the same way. Some questions may not get answers, but its better than holding it all in.

It is overwhelming at first, but, try to stay calm and focused. Talk to close friends and family if you can, sometimes sharing the fear really helps.

While you will technically have ITP for ever, lots and lots of people go into remission either with treatment or, as my previous haematologist used to say, it often just seems to burn itself out. So don't see it as a for ever thing, just take it as it is for now. And no, you won't pass it on to your children.

If you want to know the how and why of ITP as far as they know it, then a google search on something like 'the pathophysiology of ITP' will find many articles. From there you can find more and on and on it goes. There is heaps to read but do look at the date of any articles because knowledge has changed in the last few years and anything older than five or so years will most likely be out of date.

Amber:

ITP happens to people of all ages, even children. Usually it's chronic for adults, but that does not mean forever. I struggled with up and down counts for 8 years before I went into remission. I've had 7 treatment free years at this point. It happens all the time.

As for ITP, most people consider it more of a pain in the butt than anything. Treatments can be worse than the disorder itself. For most people, it's managable, and that's the important thing.

The hardest part of this all is the fear of the unknown and what is ahead of me.It is scary when you walk into the room after giving blood and your doctor says "well, I wasnt expecting your platelets to drop that low so quick." We are still trying to find a treatment that works, and it gets frustrating. I have had a four day infusion of 40mg steroid to 100 mg oral steroid. I am taking it one day at a time and talking to friends and family to raise awareness. I will forever support blood related diseases and have even considered putting together a walk in my area. I do appreciate all the support and look forward to taking this journey with all of you:)

Amber:

The one thing that I have noticed over the years is that the patient tends to take their cue from the doctor. If they have a doctor that is not very optimistic, the patient tends to take things much harder. Statements like that are sometimes unnecessary and can scare people. It doesn't have to be that way.

Counts can and do drop quickly with ITP. That is not unusual in the least. ITP is unpredictable, so there should not be any expectations. There should be hope though!

Steroid infusions are rarely done for ITP, especially over 4 days. Are you sure it wasn't IVIG? Is your doctor familiar with ITP? Some hematologists really are not up to date with current treatments. I'm not saying your doctor isn't up to date, but it might be a good idea to start asking some questions.

Finding a treatment that works is frustrating. Most people do go through several until they find one that works. It takes time and patience. What you have to keep in mind is that counts over 30,000 are usually safe counts, so if you can maintain that, you're doing okay. Normal counts are usually the goal at first, but sometimes you have to lower that goal to feel satisfied. It's okay to be below normal.

You're going to be okay. This is a bump in the road of life and you can do this. Just try to keep life as normal as possible for your kids. Hug them 30 times a day and ask for kisses. That is what will get you through the days.

Amber, you are going to be fine! Please relax and try not to let ITP consume your life. Stressing out over it does not help. Prolonged stress is hard on the immune system. I feel stress triggered my ITP. When I was diagnosed 8 yrs ago, I was glad there was a diagnosis for my low Platelets but then scared of the unknowns with this diagnosis. What caused it and why consumed my thoghts everyday!! I started on Prednisone, counts responded slow and droped as I tapered off. Two Platelet transfussions which did not last. Two Rituxin treatments. 1st lasted for 16 months, 2nd is going on over 21/2 years now!!! There are other treatments and I am sure you will find one that works. Not every treatment works the same for each individual. It is kind of a try it and see game. I agree with your anti-Splenectomy. I was waiting for my results one time and when the #'s popped up on the screen the Tech said "Holy Sh**"! That is not a phrase you want to hear when waiting for results. I work with the Tech so, her response was not inappropriate. ITP is a "Rollercoaster" ride, so do not let the ups and downs get you down!! Staying positive is crutial in ths battle with this Evil monster. Just remember you are not alone!!!