Hello, Im new.

Hi, im new here. Im a 20 yr old female who was recently diagnosed with ITP. I have so mnay questions, im on Prednisone and the side effects are killing me. I also have anemia but i guess thats normal with ITP? Im just scared. I never thought id ever like... idk. Im terrified. Ive read stories where people have it for years and im afraid ill have it for years. How do i know its chronic or what? Can i exercise reguarly? What life changes am i going to have to make? Can i die from this? Will it go away eventually? Does everyone experience weakness or shaking in their hands? Or confusion and headaches? Im always hungry and im gaining weight but how do i lose it? Can i still go to the gym? I only sleep 4-5 hours every night. I have trouble sleeping. Im sorry for the questions. I just dont know where to go or what to do. I dont have medical insurance and i was discharged from the hospital with a platelet count of 35. I was down to a 4 when i got there, they did 2 platelet transfusions and it went down to a 3, i was on prednisone for 2 days and it went to a 2. They did prednisone through the IV and it was still at a 2. They did the IVIG and it went up to 11, another IVIG and went to 26, another IVIG and went to 35. I was discharged with Iron pills and Prednisone. But will it go away eventually?
Im just afraid.

Marie, unfortunately the answer to many of your questions is no one knows. I don't know what is necessary to proceed without medical insurance and would think that would be a priority item.

I suppose you have bleeding issues which caused the diagnosis. Some folks need both steroids AND IVIG to get counts up. Other's, like me, can get counts up with IVIG alone. It is good to know what specifically helps you and just get that when you have a problem.

From an ITP perspective, I'd work towards getting on either 'Promacta' or 'Nplate'. They stimulate one's bones into making more platelets. For many/most, life gets back to normal when on either of those.

Hope this helps.

Hi Marie- so sorry to hear you are having such a tough time. Glad you found the forum, it has a lot of great information. The symptoms that you describe sound like prednisone and NOT ITP. I have never had symptoms with ITP only mild bruising- some people having bleeding, heavy periods etc. Are you having bleeding issues? Prednisone omg it makes me crazy, insomnia, shakey, hyper, anxiety and BIG weight gain esp in upper body. So as Hal said try to get off of prednisone and onto something better so you can stay out of the hospital. People like Promacta which is a pill designed for ITP, I take Nplate which is an injection thats given in the doctors office once a week. Some people go into remission with these drugs, counts go up and stay up. ITP isn't always a chronic thing sometimes it goes away and most people can manage it without any risk of death.

Best thing you can do is to get a good hematologist- someone who is smart and easy to talk to, someone calm and doesn't over-react and someone who is up to date on the drugs and research. That is important. There are better drugs than prednisone especially if its not even working- but it must be tapered, you can't quit taking it without tapering off. Try not to worry- hope you can get some good support from your parents and doctors. Do your parents have medical insurance? Usually kids can be on their parent's policy until they are 26 (if you are in the USA). My son is 26 now and got on ObamaCare ( Covered California). He went to our local health clinic and they helped him sign up with an insurance counselor. He pays nothing for health insurance and is fully covered- income must be below $19000. per year. But I know that every state in the USA is different with health insurance coverage(so crazy) California is easier than most states. So look into getting some health insurance, keep asking questions- you'll learn a lot! And maybe your doctor can get you some Promacta. I got it for free from the manufacturer when I had no health insurance- (there are programs, not sure what they are now). The doctors office will have to help with that. Good luck! Keep checking in with any questions- try not to worry. I know its hard to do esp if you are on that anxiety-inducing prednisone! take care

Hi Marie. I'm glad you're here. Keep reading, hopefully it will calm you down.

ITP is rarely fatal, especially when you're monitoring and treating it. You are. Low counts are not a medical emergency, but symptoms can be. If your symptoms are mild (no bleeding), your body is handling the low counts ok.

ITP can be chronic, but that doesn't mean that it will be. ITP can remit at any time, weeks, months or years later. Usually as long as counts are over 50, you can resume normal activities. It can take time to find a treatment that works, so patience is important.

Hi Marie,
Don't worry, while a big pain in the as*, ITP is rarely serious. Steroids are usually taken as a first line of treatment and you'll get off them after a while since they shouldnt be taken in high doses for a long time. I refused them after a while bc they made me feel extremely depressed and moody, I had the moon face and excess body hair from it... overall it was the worst experience ever. Talk to your doctor about trying another medication.
I'm 21 and have had ITP for quite some time. If you have any questions feel free to contact me through private messages, or ask for my email/number/socialmedia if you want.

All the best to you!! :laugh: