Two months ago I got a diagnosis of itp. Since Xmas time hadn't been feeling my normal self but put it down to the fact that Xmas is quite a pressurised season.in may I woke up with 2 large bruises and a rash all over my body.Got an emergency appt with my local drs and got a phone call from the out of hours dr at 10pm my palette count was zero.very hard to not panic when doc says don't panic.Luckily my in laws were able to have my two children whilst my partner took me to hospital. Immediately they started steriod treatment and fortnightly blood tests. My veins got so bad blood has to be taken from my hands (luckily I don't mind needles).8 weeks later things look good I am having counts between 140-150s so I wean off steriods. 2 weeks ago I had a blood test my count had dropped to 47.2 weeks on I have a rash and lots of small bruising (rather than a couple of large ones).Phoned the hospital get told to come straight down have blood test and my count has dropped to 5. Back on steriods for two days and then have another blood test. So far there is no explanation for why this has happened again.I wondering if anyone else has had the same experience as it's so frustrating being told that you may never know why fingers crossed I'll feel my normal self soon.looking forward to hearing about your experiences 😊😊
Kirsty07 Kirsty07
31-35, F
1 Response Aug 21, 2014

I have had itp for about 2years(had attack about 15years ago,disappeared for a while). I have also started to get clots in my legs which means I must be on Coumadin forever.this also means my platelet counts must be at least 50,000.i have been on rituxen(didn't work) nplate and promacta.i have decided to have a splenectomy because it's the only possible cure,everything else is just a treatment which I would have to be on the rest of my life.

Thankyou for your response. At the moment I'm on prednislone which my body is responding but the drs are saying as that it's a recent diagnosis it's a case of try the meds and wait and see.They are reluctant to discuss any other treatment at the moment as they want to rule out all possible causes first. I've had to my own research online about itp.Did your itp just start spontaneously or did you ever get a cause? I hope your splenectomy goes well for you.

I have been on prednisolone but I have diabetes and it kills my sugar numbers. No, they have never found a cause that's what the "I" in itp stands for(they don't know .if I could be on prednisolone I'd be thrilled.)

Also,I didn't need any treatment until I was on Coumadin or needed surgery. Even though my platelets sometimes went as low as 18. My doctor said as long as I had no bad symptoms I didn't need anything.