Idiopathic thrombocytopenic purpura (itp): Bleeding disorder in which the immune system destroys platelets, which are necessary for normal blood clotting
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Born 2008. Got diagnosed with ITP when she was Two years old. Female and starting to show start off puberty. Breasts started to develop a couple of months ago. Blood platelet count always around 10,000-20,000. Had a stomach hemorrhage 3 years ago, no other severe cases of bleeding. Occasionally bleeds in the mouth. Really worried how the onset of her menstrual cycle will turn out to be with her.
It took the doctors years to diagnose me with lupus. I have always had low platelets. *Cannot take aspirin; or anti-inflammatories: I take pain medications for bulging disks; migraines frequently; and have had (5)five infusions of IVIG. Now I will be trying this new drug, called "Promacta." Insurance said that it was approved; However, it is very costly when I reviewed it on google. Can anyone out there tell me if you have taken it, have any idea of the cost or have any other information regarding this drug? Please and thank you for any information that is given. It is appreciated more than you know.
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since onset, my dads personality has changed and not for the better. at first we all thought it was due to the high dose of steroids but have since decided maybe that's not it. he has become completely paranoid of his family, constantly yelling at them. is not speaking with my mother in a marriage of 50 years with real happiness and good memories, has a constant smirk on his face, and makes constant off color comments and jokes, usually very hurtful to the person he is speaking about. when he was in the hospital, during his acute attack he was constantly repeating himself 3, 4 and 5 times in a row to doctors, nurses family, saying words backwards or simply incorrectly at one point following such an incident I asked him "dad, do you know you just said that word completely screwed up? " he replied " yeah, I know, I keep doing that, its since I've been here". no doctor has addressed this issue and I am hoping for some kind of info to go on.
I need the ear of someone special in this field - the forum members - and so I am wondering if you have any thoughts on where to look for innovation in this case - a piece of advice from you or a paper or contact who might have some ideas. I put together a few points of information on a case that is somewhat novel. If you have a moment to jot down a place for me to pursue further information I'd be most grateful. Thank you. Robin Patient: Female, 49 healthy, healthy lifestyle, school teacher, married, two children. History: Colon cancer successfully treated (resection, no chemo) 12 years ago. Breast cancer found 6 months ago. Problem: Herceptin treatment appears to cause ITP. Platelets were 240' before herceptin on Friday morning, dropped to 6 on Sunday morning… 1. 3 weeks ago she got herceptin on the first Thursday, then docitaxol and carboplatin on Friday. Had a reaction to the herceptin on that Thursday - base of spine pain up to the head. 2. Then, a shot of neuplastin on Saturday and a huge bruise appeared immed Platelets under 5 on Monday 3. Then this past time, Friday a new herceptin, with nothing else, then platelets at 6 on Sunday. They're treating her with IVIG (second day today) and then they'll see what happens. No clear idea what they are/will be doing re: moving forward with chemo. The team is excellent but this is a grey area for all. Request: Any ideas for the care team to consider? Urgent need for support of this excellent team – there are no clear avenues of treatment to pursue.
my granddaughter is 10, she has battled ITP since she was 4 1/2. She was diagnosed after falling 3 ft. off the ground, and had bleeding of the brain. 3 months before the fall she had over 6 vaccines ( needed to enter kindergarten) I believe this is what caused her ITP. Had lots of IVIG treatments, steroids...and now going to start Rituxan. Her platelets get as low as 1 (1000).
I have been battling with ITP for 3 years (maybe more, but that's when I was diagnosed). I have been treated with steroids, which just put my platelets on a roller coaster, not to mention my moods and weight! I also underwent Rituxan treatment, with no success. I temporarily stopped going to the Hematologist and titrate of steroids and the antifungals. I'm also a chronic pain patient who is treated with short acting narcotics, and my pain dr is looking for a long-term med to help ease my pain. I'm frustrated and haven't met anyone with ITP who I can talk to. I am looking forward to meeting you and sharing/learning from you.
I had a textbook onset of childhood ITP which was ultimately brought back into line with Pred. I recently had a relapse (also textbook) after 38 years. A short round of Decadone (sp?) steroids, my count bounced back up, but didn't stay. So I am now awaiting one more Rituxan treatment to complete my four week course of that. This has been bolstered with two more short, strong decadone steroids doses. My count seems to have plateaued at 197 and we are optimistic that it remains here. I have been told the long term effects of Rituxan are 6-12 months so ideally this works as a "hard reboot" of my immune system. I will say after three rounds of hard on/hard off steroids and three weeks of Rituxan, I am done with drugs.
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