It's a lot to take in...

I am 19 years old and on March 13, I was admitted to the hospital with a platelet count of 4,000. After all the tests, I was diagnosed with ITP and given a transfusion of platelets, 2 rounds of IVIG, and started on 60 mg of Prednisone. Upon my discharge from the hospital, I had a count of 241,000. I had my first check since the hospital and I am up to 502,000. I'm trying to stay optimistic but I'm extremely scared. I'm scared that once I'm tapered off the Prednisone, my count will drop again. I'm scared of the unknown and I there is a lot of unknown right now. I guess I'm just looking for some encouragement or something. Thank you!

You came to the right place!

First of all, you are having a fantastic response to treatment. Better than most. Your chances of maintaining a normal platelet count are good. For some people, it is a one time thing. For others, it's not. But if it's not, you'll still be okay.

There are two reasons that people fear counts dropping. One, they fear low counts. Two, they fear having to treat again. If counts drop, you already know that you do very well with treatments and can get counts back up quickly. Plus, you are being monitored. Low counts can be scary, but most people do just fine. If your counts do drop, you will likely know ahead of time and take action, so try not to be afraid of that. Fearing treatments is also normal. No one likes it. But we have all found that you do get through it. In time, most people learn to just take a deep breath and dive in. They do what they have to do, just as you are now.

Yes, there is a lot of unknown when dealing with ITP. You don't know what's going to happen next. But I can guarantee you that every single one of us has learned to take it one day at a time and keep going. Stick to your life's plans and keep things normal. Sometimes that is difficult, but you'll be glad that you did.

We're here anytime you need us. This is a good group with a lot of good advice, so don't be afraid to come and ask questions or vent.

This is a good read:

pdsa.org/forum-sp-534/5-newly-diagnosed-a-frequently-asked-questions/8344-excellent-advice.html

Thank you very much! I know that with time I'll get used to having this and it'll be a little easier. I'm just extremely overwhelmed right now.

It is overwhelming at first. Hope you have some family and friends close by who can help you through. There is lots of helpful info on this site a great support! I was in the hospital Feb 15 with counts of 4k. Things are pretty much okay now 8 wks later. How are you doing with the prednisone?

Dru

I still live at home and my parents have been awesome. I have tons of extended family in the area who have all done research and have helped me as well. I'm okay most days with the Prednisone. I am having trouble sleeping but whenever I take anything to help me sleep I'm in a fog the rest of the day. I'm a full time student so I'm trying to make do with whatever sleep I can get. I get mood swings as well and upset stomachs but other than that I'm managing. I'll be glad when I'm off the Prednisone.
Are you on it as well?

Glad you have such a good support system. That really helps. I am still tapering off prednisone that I started in Feb. But I am only on 1mg right now. My doc always gives me ranitidine with the prednisone which helps with stomach upset. I get mood swings as well with prednisone but just try to work through it like you are.

I'm on Protonix to help with my stomach and most days I'm okay. Have you had high blood pressure or trouble sleeping with the Prednisone?

Both of those are common side effects. They get better as the dose is tapered.

Yes, I cant sleep on high doses of prednisone. It gets better for me when I get down to 15mg and lower. I get high blood pressure but not too bad, also get slightly high blood sugar. I'm real careful to eat healthy foods, limited sweets to help with the high blood sugar, and I don't usually gain weight on it, which seems to be a big problem for many people.

On the good side, I got lots done when I was on the high dose, got my house all clean and did lots of paperwork for my job.

Are there side effects or withdrawal symptoms as I get tapered?

I know I haven't been on it very long but I haven't put on any weight and I'm hoping it'll stay like that. It seems like if all I'm getting is some trouble sleeping and stomach issues, I'm doing pretty well compared to other people!

If you haven't gained any weight so far then that shouldn't be a problem for you.

For me I am fine with the withdrawal, I sleep better and feel okay. But when I go off all the way I have bad joint and muscle aches, fatigue. This time I'm on a very slow taper to see if that works better. But, you are much younger than me, you should be fine and the sleeping trouble and stomach aches will be gone.

Everyone is different. As I tapered, I had extreme fatigue and muscle weakness. Some people get clinically depressed, but mostly after being on high doses for a while.

I'm hoping I'll get tapered off soon. I have my first appointment with a hematologist on the 18th. Thank you both so much for answering my questions! It helps to kind of know what lies ahead.

The most important thing to keep in mind is that it does get better.

It does get much easier to deal with, the being overwhelmed part does not last too long. Good luck with your dr appt and let us know how it goes.

I will! Thanks again!

Well, I had my first visit with the hematologist today. She's starting to taper me off the prednisone beginning tomorrow! I am so happy! I'll be doing weekly blood work which sucks because my veins are really crappy but I guess I gotta get used to it. The appointment went well, I'm just nervous about tapering.

That is great news you can taper the prednisone now. What were your counts?
My veins are crappy too. Some things that help for me are: drink lots of water the day before and morning of blood draw. Ask them to use a butterfly or pediatric needle. Sometimes they are willing to do a finger stick too. You definitely get used to it after a while.

Hopefully your stomach aches and trouble sleeping will improve now. What dose will you be on now?

They're not taking blood until Wednesday. They wanted to see how I react to the lower dose. The last time they checked was the 30th and they were 502,000.
I'll definitely ask about the needles.
and I'll be on 50mg for a week beginning tomorrow then 40 for a week. Then I go back in to the hematologist. and of course, this is all happening as I have finals for my college classes. I'm hoping I can stay focused and do well!

Good luck with your finals, stay focused on school!

Your counts are fantastic! A little high even. Sometimes a response like this is a good sign of remission, and I hope that's the case with you. Watch the taper - not too fast or you could crash.

Good luck with finals!

Thank you guys! I'm hoping everything goes well!