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ITP... 9 years 4 months ago #34978

  • AylookitsAly
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  • Posts: 25
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Hi, My name is Aly. I am 18 and I live in Texas. I was diagnosed with ITP about four months ago in April. My count was 10,000. I got a platelet transfusion and was given prednisone. I was on it for about two weeks in April and my counts went up a bit, and tapered off it as my doctor told me to. That doctor I was going to did not monitor it correctly I suppose and two days after I stopped it my counts went back to 10,000 again. I then switched doctors and was put on prednisone again. I have a big old moonface and just want my face back, I don't even leave my house anymore because of how swollen my face looks and I am just miserable. :( I wish I never went on these steroids, I never even felt sick at all until I started them! I would much rather have bruises and little red dots, than feel this miserable...
On a lighter note, my counts have still been increasing even though I am tapering. My count right now is 205,000. I am going off the steroids in about two weeks and I am so scared to get low counts once i'm off them. I don't want to be on steroids forever! I know there are other treatments but they're expensive and I know that they don't work on everyone. I am just so confused and scared with this disease. Has anyone here gone through something similar? Do things get better? Can I have a normal life again?

Sorry for this long rant, I am just new to all this and don't know what to expect and am very afraid..

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