Thanks Nickirae for posting on this thread I missed in when I joined.
Its a long thread and it with people with ITP and not TTP. No offence to people with TTP but you tend to look down your nose that tthose with ITP. or so it looks like from the threads, which is a shame because they are sister illness and as such we should be supporting each other not state whoes is worse better and more serious. Low Platelet can be dangerous where the cause is know ie TTP or unknow ITP.
When our count are low we are vunerable, when they are high we are greatfull.

Hugs to EVERYONE, may you platelets rise and cause you no worries.

Tiggy

Im 41 and I have had ITP since I was 10 yrs old . I had my spleens removed and I had 2 one on top of the other. I have had maney bouts of depression . I work as a Chef and work with sharp Knives every day and wory on occassion when I get cut . I spent 9 months in a hospital consecetivley had to learn how to walk all over agin from deterrating mussels in my legs . I have a long story to but im still here fighting every day . 31 years gows buy in a flash . when you focus on liveing for the now .

I feel as if it does cause depression because of the fact that you are so tired and sometimes your hope level is at the lowest. But that's just me. I've only had ITP for a little over a year. But today I hit my head while playing flag football and got a tiny headache, yet I'm scared because my count is at 126,000. So yeah :/

My 2 year old son has an acute case of ITP. He got diagnosed November of 2010, about a week before his 2nd birthday. His platelet count is all over the place. His pediatrician and hematologist really isn't helpful giving us information. I have yet to meet anyone whose child has or has had ITP. He's had two IVIG treatments and they don't seem to work. This week, his platelet count is at 31,000. Last week, he was at 97,000. I cry every night about it. I hate having to bring my son up to the hospital every week because of it. People stare at him and his father & I alot because of all his bruises. I think I just need to find a mother/father/aunt/grandmother ANYONE who has had a child that has or had ITP.

Hi, my husband had a blood test yesterday after going to the doctors with a rash on his legs and was told to go straight to a&e where he was admitted to hospital with a platelet count of 1.

We have since been told that he has ITP and they want to do a bone marrow biopsy. His red and white cell counts are fine. We have never heard of this condition and so far the doctors seem not to be worried. That said, they are keeping him in for at least a week on steroid treatment to monitor his platelet levels.

I can't help thinking they are playing the situation down a little.

What impact will this condition have on his, and our families, life?

Thanks for any help.

My son was diagnosis ed back in may 2010. He has been on IVIG every 3 to 4 weeks. They tried him on steroids. It worked the 1st month. The next month they were back down. So he is not responding to the steroids. So the hemo doctor said lets do IVIG for 6 more months and see how that go. So im wondering wats next?

I'm 50, I was diagnosed with ITP in 05', my count was 55, the doctors said that was my new normal...

In March of 2010, I had a heart attack while having kidney stones removed, and the Cardiology doctors were upset that I hadn't been seen or treated since 05', my counts had dropped to 23,

for the past year, I have tried steroids, IVIG, Rituxin... nothing seems to do much... so I get transfusions of platelets... before any invasive medical work...

the doctors have said I can live a "nearly normal" life... from what I read, I shouldn't ride motorcycles, I should avoid any physical contact events, I shouldn't fly, (ITP can let us have brain bleeds during altitude changes...

I wear a CPAP machine at night, and have found I bleed out of my ears because of the air pressure.... I'm diabetic, so I stick my self several times a day, and it can take up to 10 min. for my finger to stop oozing...

I can't imagine what it would be like to have a child with this... but I have heard that children do tend to grow out of this...

OK so im new to this whole support group thing. I have had ITP for about 2 years now. We tried steroid treatments but they didnt seem to help at all so we moved on to IVIG and while it does make a dramatic boost in my platelets it also usually comes with a week long migrain and vomitting. I had and infusion done monday out of the blue so ive been home in the dark all week. I am also trying a new treatment called N-Plate which is a weekly shot in the stomoach area. Its been giving me mixed results. I feel like this Disease or whatever it is, is making a job out of taking my freedom away. I havent had any personal contact with anyone who wasnt my parents or doctors. I miss people now more than ever and im amazed my girlfriend hasnt left me yet since i havent seen her in months. Im always alone when im home because my parents's jobs keep them away from home all day. i just feel alone all the time and anyone to talk to would be greatly appreciated.

Hi, not sure how frequently this forum is used as some of the posts seem quite old. I've had ITP since I was 19, am now 45. My first count was 5 and I was admitted to hospital for bone marrow test to rule out anything "nasty"...started on steroids. I responded ok to the steroids but as soon as they were reduced my count reduced too. After 5 months on high dose steroids (with no protection so I now have osteopenia and oesophageal reflux) I eventually had a splenectomy. Biggest scar ever...and my count hovered around the 80 mark for the next 20 odd years, knocking down to the 40s at time of viruses, and into single figures after gastric bugs. I've managed my ITP ok over the years, I worked from home and felt relatively well. If I started bruising I rested. At times of low counts after viruses I had IVIG to boost them, and after trying to get pregnant my count really suffered a few years back. 2 miscarriages later and I gave up on the idea of kids. Instead decided to give up my job, where I worked from home, and went to university to study a new career. I now feel this has been the biggest mistake of my life. My count won't get above 50, I've had 15 viruses in the last year and in the last 2 months I've had counts of 14 and then last week, after a stomach bug, 9. So 2 lots of IVIG. I fight depression and fatigue the whole time and for the first time in 26 years of having this disease feel finally beaten by it. My docs in the UK are suggesting N-plate (romiplostin) and I'm essentially looking for people's comments on it. How are you finding it? I started migraines last year so the thought of more headaches doesn't fill me with glee but would be grateful for any feedback. Thank you for taking the time to read and respond.

I'm in the UK and I've been using Nplate for 3 years. Started it on a drug trial and have continued. I get no side effects and my count hovers around 70 or so. I inject myself at home and just go for blood tests every couple of months. It works well for me.

The American PDSA discussion group is more lively. I suggest you go look over there.

I've had ITP since I was 6 months old and I'm now 19, I've been in remission for about 3 years now, although my platelets do crash once or twice a year I'm lucky enough to be able to successfully get off the prednisone. I've gotten many IVIG's when I was little, and sometimes it can be scary thinking about it. I also had my spleen removed when I was younger, and I've been very fortunate that I don't get colds as often as everyone else considering I dont have a spleen. I'm happy they are coming out with new drugs to be able to help other people with ITP. I'm here to listen to anyone if you ever need a friend or someone to talk to :).