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TOPIC: I've had Itp since last September

I've had Itp since last September 5 years 7 months ago #35529

  • spinner9
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I first found out that I had Itp last September. I was away at college and I wasn't feeling good for a while. I kept feeling like I had no energy to do anything. I was looking pale. I actually noticed the petechiae before I went to college and I showed it to my doctor at the time, but she said that I was just scratching too hard and that's why I was bruising, but this wasn't true because I barely scratched once and I would break out in dots. Then when I went to college I was starting to get more noticeable symptoms. When a friend noticed how I wasn't looking good and I was beginning to have no appetite, she took me to the hospital thinking that I may have had a UTI because I was also going to the bathroom alot, but that test came back negative. I then got blood work done and they sent me back to my dorm room. I then got voicemails on my phone from the hospital doctor that I needed to get back to the hospital and they had a bed and everything waiting for me. The doctor said that what I had wasn't leukemia, but it was called itp, but it still scared the living crap out of me because I had no idea what was going on. My platelet count was down at 6,000. After 5 days in the hospital, my platelets went up, but I have to admit, I was scared in the hospital because the doctors weren't sure how I was going to react to the IVIG and they didn't know whether I would need a bone marrow transplant or what, but they did give me a platelet transfusion. I went back to college but it was so hard trying to catch up after missing it for 2 weeks. At that time I was in the physical therapy assistant program, but one of the teachers I had wasn't making it easy to catch up with work so I had to drop out of her 3 classes. I then tried to go to 3 other classes and I was also now living with the same friend because I moved out of the dorm, but things weren't easy there either. With so much going on, with me being recently sick, it was very hard to stay away from my family. So I had to medically withdraw from college and I went back home. I took that as a sign that maybe I wasn't meant to be a pta. I stayed home and waited for the semester to start at a college that was closer to home. At this time, I was so thankful for all of the support that I got from my family, friends, and from my church. I couldn't believe it all. I was on prednisone after I got out of the hospital and then I was off of it for about a month. I noticed the petechiae and knew that I needed to go to the hospital. My platelets were down to 6,000 again and I ended up being in the hospital during Thanksgiving. I was put on prednisone again and was at 60mg. Now it's about the 5th time that they have tried to taper me off of it from 10mg and decreasing by 2.5 everytime, but everytime I get down to 2.5mg I had to go back up to 10mg because my platelets got too low. Lately it's been hard, especially with having the side effects from the prednisone for like ever and my platelet counts being a roller coaster. I recently had to have a talk with my hematologist about if the prednisone doesn't help with getting me to be stable soon and to be able to go off of it then I may have to try different medications or I may have to have a splenectomy. This is really crazy how my platelet counts have been all over the place lately and I am hoping to God that they will be stable soon and I will be able to get off of the prednisone. Sorry about this long story, but this is all new to me because I didn't know that this existed for me to be able to talk to people that I can actually relate to.

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I've had Itp since last September 5 years 7 months ago #35531

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Spinner:

It sounds like your world has been turned upside down for a while. It is totally possible to live a normal life with ITP, the trick is finding the best treatment to do it. A good hematologist is a must; someone who will realize that your lifestyle is difficult on steroids. Most of us try them at first, but if counts do not stay up after a few months, we move on to another treatment.

You really have to be your own advocate with ITP. You have to sometimes push for what you think might be a better option, and you have to educate yourself about ITP. Looking at symptoms instead of counts is important. It is possible to attain a remission....some treatments can accomplish that. You don't have to give up your dreams, ITP just makes them a bit more of a challenge. Many of us have continued work, school, raising children, etc while having low counts and during treatments. It isn't easy, but it is possible.

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I've had Itp since last September 5 years 6 months ago #36295

  • AmberLynn
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I know how you feel about the prednisone, I've been on it for over a year now because everytime I'm almost off, the doctor would put me back up to sixty or forty. I'm having a really hard time too, I was diagnosed just a month before you were. I've been trying to keep up in high school, but I missed almost two hundred days last year from getting sick or my count dropping. I was in and out of the hospital all summer, and I've already been sent home a couple of times from school becasue I couldn't make it through the day. I was just too tired. The one thing to remember is to keep your head up! Don't let it get you down. Find someone who you can talk to about it. Someone who will be super understanding, and there are plenty of those people here on this site. I hope you have more luck in the future!
“Life is a theatre set in which there are but few practicable entrances.”
― Victor Hugo, Les Misérables

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