I was just diagnosed with ITP a week ago..

Hi.. Im a 36 year old female and have been healthy since this. Only meds I was taking was birth control pills. I had a recall on them and the pharmacy changed manufacturers (supposenly the pills got mixed up in the packets). This was in Dec.2011. I then started bleeding for the whole month on January and started to have chest pains. I went to the doctor also thinking I may have a bladder infection. She didn't find anything and did blood work. (towards the end of January and platelet count was 170,000) I returned 2 weeks later for blood test results. I had lost about 15 pounds in 2 weeks unexplained.They found nothing wrong but my cholestrol was a little high and she wanted me to watch my diet and check it again in 3 months. She also stated the chest pains where anxiety and told me to exercise more. ( which was a joke). A week later on Wednesday Feb. 8th I woke up with lots of bruising on my legs and arms and chest pains. My husband thought I got in a fight r something they where so bad. i freaked out and called the doctor. She refered me to the ER. When I got there they did a EKG.. negative, chest xray, negative, my d-dimer was elevated which could have indicated a blood clot so they did a CAT scan of my lungs which was also negative. The only thing they found was a UTI. ( later when i got my medical records on friday my platelet count was 70,000 but no one said anything at the ER). Friday morning I woke up with horrible left leg pain( the leg with the most bruising)and more bruising and the red pin dots on both legs. So I decided to go to a different ER. They did a ultrsound of my legs and that was negative. my platelet count was down to 25,000. They diagnosed me with ITP and sent me home with 140 mg of prednisone. ( I am a larger person and supposenly this was the dose I needed) Which the pharmist even questioned the large dosage.I started them on friday Feb 10th. Saturday I had the most horrible headache and it hasnt went away. I returned to the doctor on Monday and had a recheck of my platlets and they did go up. 134,000. She refered me to a hemotolgist and my 1st appointment is tomorrow morning. Im having soooo many bad side effects of this medicine. My heart is racing so fast, still have the chest pains, I now have high blood pressure (150-101 was my highest so far)I can't focus, Im confused,forgetting things, can't sleep,dizzy, depressed, have high anxiety now.. gained 5 pounds so far in the 6 days. I don't want to leave the house so I haven't been to work in a week. I decided today to taper myself off and I only took 120mg today. Im hoping tomorrow the doctor will lower it more. I hate this medicine. I want my life back. I hope this goes away and is acute and not chronic ITP. The research Ive been doing has me so scared about all these side effects. Will they go away and how long usually does it take once off the prenisone? Thanks for reading my story.. any advise is greatly apprieciated..

I had really bad side affects from the prednisone also. Every case is different but with me I tend to be on it for about a month and a half gradually tapering down during that time. Whenever I'm on it I gain weight and have found having a healthy snack like carrot sticks or something else low in calories helps to minimize the weight gain since all I want to do is stick food in my mouth. Hopefully you'll have either acute or a more moderate form. Best of luck

Hello. You've come to the right place!

The side effects that you are having from Prednisone are typical. I had the same ones and most do on the higher doses. You just have to remind yourself to breathe slowly and try to stay calm. Take things one day at a time, you'll get through it.

As for the symptoms you were having before diagnosis - that is not typical of ITP except for the bruising. If that keeps up, you should think about having some more tests done outside of the ER. Maybe talk to your GP.

Your counts are doing well and it could be time to taper, but I'd let the doctor tell you how to do that, okay?

Thanks for replying.... I went to the hemotaligist today and my count dropped to 100.. it was 134 on Monday.. He did start tapering me down from 140mg to now im on 100mg... I did also go to a cardiologist today for some testing and are sheduling a stress test. My Hemotalogist doctor scheduled a bone marrow test and a CAT scan of my stomach.. This is just so scarey to me. I can't function on this medicine. I am a hairstylist and cant return to work because they r scared if I cut myself with my shears I'll bleed out.. I just don't know what to do. I go back on Monday to get another count. I hope they go up. THis is just so hard on me and my husband just doesn't understand.. I went from being healthy to now this. .... I will just have to take one day at a time and pray this gets better... thanks for reading..

Your counts are very safe right now. If you'd get nipped with scissors, yiou might bleed more than the average person if counts are down, but I doubt you'd bleed to death. Did you cut yourself a lot before ITP? Have you asked your doctor about it?

It's good that you are having more tests done - good luck!

yeah I did talk to my doctor and he doesn't really want to say yes its ok and then something happens.. so I just purchased a special glove to help prevent cutting while cutting hair. and I was thinking of having one of those stick things that stop bleeding on hand while at the shop.. I also was curious.. I noticed alot of others had really low counts like below 10,000... mine never went past 25,000.. and r ranging between 134 and 100 so far.. do u think mine could be a acute ITP ( one time thing) since mine never dropped past 25,000?? are am I just having wishful thinking?? Im on the road of tapering down off the prednisone now so I guess time will tell???

I work construction and have ITP, my doctor had no problem with me working on site as long as my counts were above 100. I actually had an incident in July 2011 where I didn't realize I was as low as I was so I was still working. I found out I was low when I took off the tip if my finger while chipping concrete. My fingernail got ripped off and I tore off all the skin and meat down to the bone (which was exposed). Imwas bleeding quite a bit and while I was at the ER they checked my platelets and informed me I was low. I don't remember my exact numbers but I was under 25. Prior to that I was always REALLY worried about what would happen if I ever hurt myself when my counts were down. I worried that I'd get cut and bleed to death or something. It ended up not being that big a deal. They wrapped up my finger and it "oozed" for quite awhile but it wasn't the end of the world or anything. I even drove myself home from the hospital that evening. They put me back on prednisone and I was fine. Aside from the missing piece of my finger I had no issues from the incident, ITP related or otherwise. You need to tell your bosses they're over reacting. Unless your platelets are really REALLY low even if you get cut you'll be fine. Only difference between you and someone without ITP is that it'll probably take you a little longer to stop bleeding.