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..
The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.
Platelet Disorder Support Association 8751 Brecksville Road, Suite 150, Cleveland, Ohio 44141 Phone: 1-87-PLATELET | 877-528-3538 (toll free) | or 440-746-9003 E-mail: email@example.com