Hi, I'm 18 years old and I've been diagnosed with ITP for 8 months now. I've been taking steroids since last April, starting in 50mg. In July, I gave a chance to natural medicine. It didn't work for me; in fact, it made it worse, dropping my platelet count to 35k. Currently I'm at 20mg, but every time I lower my doses, my platelets go down with it. My doctors have suggested splenectomy. I would like to hear what you guys think about that. I'm a bit worried and I would like some advice on this. Thank you!
I am 22, college student. I have had ITP for 9 years. I had my spleen removed a year ago. Honestly, it didn't work, but I'm glad I did it. Splenectomy wasn't so horrible that I regret knowing whether it was helpful or not. It was laparoscopic. I don’t have huge scar, only 3 little circle scars. There was soreness after, but I had pain killers. I was in the hospital for 3 days, and another weekend I was out with my friends. Well, I can only tell you that was relief for me.
I had a spleenectomy 1 year ago. I had ITP for about 3 years before that and then had a baby. After the baby I had to have surgery. I was also on steroids for almost 1 year before the surgery and again after the surgery for a couple of months. Now my platelet count is very high! The surgery is not that bad at all! Good Luck!
I was just diagnosed with ITP last month, I work in a hospital so I have all the resourses we need, if anyone has any questions please feel free to call me on my cell phone (248) 410-6666, the scary thing was my platelet count at 2, yes 2, i did'nt know what to do, the er doctor told me i had cancer, i fliped out, turned out i have ITP, I was taking decadron 40 mg a day i felt like i was going to die, I told my dr. i could not take them anymore, we decided to do the spleenectomy, so hopefully this wednesday i go to surgery. right now im taking prednisone it's not that bad.
I have had ITP for 5 years. I was against a spleenectomy because there was not guarantee that it would work. I had the same results with steroids, as soon as I tapered off, my count went back down. (which is not unusual) I tried every other treatment available, even natural herbs etc., but my doctor finally said I was out of options. I had my spleen removed Dec. 26th. My count is at 247 and I am excited. My Dr. said it may go down a bit and then level off, but hopefully stay above 100. There is a high success rate with having a spleenectomy if you respond well to steroids.
I was diagnosed with ITP in 1985 while pregnant with my son. I was young then, didn't ask any questions, and the clinic Doctor didn't share much. I had my son full term, natural birth, and he was a healthy 9 pounds even. The Doctor never mentioned it again, so I grew to think it was something pregnancy related. That was until 7 years later when I begin loosing weight, bruising, gums bleding.......the whole text book definition of ITP. Since I wasn't clear on ITP when I was first was told about t, and hadn't had any problems in the 7 years.......I didn't know what was wrong with me. Niether did several Docotors that I begin seeing. They tested me for everything they could think of. Finally when my count was 70, in comes a Doctor and ask me if I had ever heard of ITP. To try and make this long fact, short........I was on steriods from 1992 until 1996 when I had my spleen removed. They didn't offer lapro back then, so I have a long scar. The good thing is I haven't had a problem since. My count is always very high.
I have been diagnosed with itp. I have lived with it unknown till about 5 months ago when I went for a routine check up and my plats were at 10. Since then I have been on prendisone from 80 mg to 10 and also did ritoxin for 4 weeks.. My count now is at 37 which came down from 56 before ritoxin. My doctor referred me to a surgeon now for spleen removal. So we will see how it works... Good luck to everyone
Hi Everyone
I was diagnosed with ITP in 2005. It has been a crazy couple years. At the time I was told it would be something that I would have to just deal with it. I have switched Hemotologists. She is now talking about doing a spleenectomy.
My question is for those of you that have had this done. Is there one question you wished you would have asked? Or if there is something they would have told you?
Thank you
I was diagnosed with ITP in 2005. It has been a crazy couple years. At the time I was told it would be something that I would have to just deal with it. I have switched Hemotologists. She is now talking about doing a spleenectomy.
My question is for those of you that have had this done. Is there one question you wished you would have asked? Or if there is something they would have told you?
Thank you
Hello to all,
I was first diagnosed with TTP when I was pregnant with my son. My platelets dropped to 7 and they induced labor at 29 weeks. I was given plasma freesis treatments for 7 days and never had another problem until...In June 2006 i was bruising and thought my iron levels were low and went in for a routine blood work. He decided he would do a CBC since it had been a while....THEY WERE 2!! I spent many months with Prednisone but the drastic drop kept occurring...I did all sorts of therapy from natural health food and vitamins to gammaglobulin. Nothing worked and the doctor said because of the inconsistency and severe drops I must have my spleen removed...I did this in August of 2006...For the last 2 years I have taken numerous platelet and steroid infusions and noting helped. The last resort was chemo, I was horrified, but had no choice. I received 4 rounds of 2 types of chemo on and off for a year and finally in November 2008 my platelets are maintaining at 126. The roughest part of the whole thing is I am sick all the time because I can't fight infection. It doesn't matter if I eat healthy or junk out, I can be fantastic for 3 weeks and go to church one time and I am on antibiotics for 5 weeks and counting. So my suggestions are be certain there aren't other treatments before loosing your spleen. There are actually new treatments that were approved in January 2009... hope this is helpful..
I was first diagnosed with TTP when I was pregnant with my son. My platelets dropped to 7 and they induced labor at 29 weeks. I was given plasma freesis treatments for 7 days and never had another problem until...In June 2006 i was bruising and thought my iron levels were low and went in for a routine blood work. He decided he would do a CBC since it had been a while....THEY WERE 2!! I spent many months with Prednisone but the drastic drop kept occurring...I did all sorts of therapy from natural health food and vitamins to gammaglobulin. Nothing worked and the doctor said because of the inconsistency and severe drops I must have my spleen removed...I did this in August of 2006...For the last 2 years I have taken numerous platelet and steroid infusions and noting helped. The last resort was chemo, I was horrified, but had no choice. I received 4 rounds of 2 types of chemo on and off for a year and finally in November 2008 my platelets are maintaining at 126. The roughest part of the whole thing is I am sick all the time because I can't fight infection. It doesn't matter if I eat healthy or junk out, I can be fantastic for 3 weeks and go to church one time and I am on antibiotics for 5 weeks and counting. So my suggestions are be certain there aren't other treatments before loosing your spleen. There are actually new treatments that were approved in January 2009... hope this is helpful..
hello all, i was diagnosed with ITP at 9 years old, at the time it wasnt bad enough to treat so they just left me and i went for regular check upps, my platelet count was between 30 and 60 usually.When i was 16 i started bruising a lot worse and my count was down to 10, i was put on steroids to begin which had little affect so i had a spleenectomy. Almost immediately my count was normal again, i was in hospital a week and back at college in 2. I am now 28 and have had no problems since, i dont even take my daily antibiotics anymore and am rarely ill! I also have a wicked scar!!!
ive had ITP since i was 10. i used steroids for a brief time but idnt like the side effects. was normally running a platlet count of 30 but I went to the doctor with pneumonia and they told me i was down to 3. i got the spleenectomy and now im around 70-100. i never get sick anymore like i use to and things are great
Hi! my daughter who is now 21 was first diagnosed with ITP when she was 17 years old, she also started out taking steroids(differing doses and kinds) and then we tried rituxin which worked for about 6 weeks before she starting going back down(her normal was around 50) the procedure(intravenous injection over several hours)was difficult on her for the first three visits and since it didnt help but for a short period we decided to do the spleenectomy. She did great afterwords but still has to be careful with piercings and she has shown some symptoms and is susceptible to catch colds and things easily. hope this info helps and good luck!