PDSA Media Relations

This is ITP

Joe's Story

The last 6 weeks have been a real roller coaster! I woke up the morning of the 4th of June with blisters in my mouth and red spots on my skin. I also had bruises on my legs and arms. My family doctor acted quickly and the blood tests confirmed what he thought. I had ITP.

I spent the next 10 days in hospital care. I was first put on Prednisone at 65mg per day to which I did not respond. On the fourth day IVIg was started and I spent the next four days being infused; still no change. By day 8, my platelet count was still under 10. Finally by day 10 my platelet levels shot up to 46. The doctors still wanted to go ahead with the Vincristine that day in preparation for the splenectomy which was booked in to be done a few days later. Thankfully I managed to buy myself some time and was discharged to see if my body could repair itself.

I would like to thank those who have put together and contributed towards the ITP people website. The hardest thing I found with ITP was understanding it. The website gave me the answers and provided excellent statistical results which in turn led me to alternative treatments and quite possibly my solution.

Kathy's Story

I was diagnosed with ITP in Dec. 1998 after I noticed large bruises that I could not account for. When my blood was checked, my platelet level was zero. I received a call at work to come to the doctor's office immediately, that there was something seriously wrong with my blood. Panicking, I returned to the doctor's and was immediately taken to the Hematologist who rechecked my blood to confirm the count and I had a bone marrow test (I never felt it, although I thought it was going to be extremely painful). After ruling out leukemia, I was sent immediately to the hospital to receive a gamma-globulin IV which gave me an extreme headache so I had to have a CAT scan to make sure I wasn't hemorraghing.

My count went up to a safe level but then it dropped back down to 27,000 within 2 weeks. I received another IV of gamma-globulin as an outpatient. My doctor recommended having a splenectomy rather than try any drugs because he felt it would just be postponing the inevitable. I was in such a daze from everything happening that I agreed. The splenectomy was not successful so I was started on 40mg/day of Prednisone in Jan. 1999. Nothing prepared me for what that drug did to me. I gained 35 pounds, my blood pressure went up, requiring medication and my nerves were so bad. I suffered terrible mood swings - angry one minute and crying the next. But the worst thing that no one warned me about was that the Prednisone caused me to have Avascular Necrosis (AVN) in my right hip and I have had trouble walking for over a year now. I will be extremely fortunate if I do not have to have a hip replacement. I have been living with the pain for a long time now hoping that I can get better without surgery.

Meanwhile, I have tapered off to 5mg of Prednisone but the Hematologist added 100mg of Danazol a day. When I was only taking 50 mg of Danazol my count went down to 3,000. I feel like I am on a roller coaster ride - constantly up and down. The thrill you experience when your count is up, and the disappointment when it goes down. I've gone through depression and a lifestyle change (I can't exercise any more because of AVN and I stay tired all the time). I have managed to continue working and I don't miss too much work although some days it takes a real effort to make it.

Ashley's Story

My name is Ashley. I live in Alaska with my Mom and Dad and little brother Conor. Yesterday my Mom took me to the doctor because I had a lot of little spots all over my legs and some all over my body. I also had some really dark purple bruises that I didn't even remember getting.

When I got to the doctor, he was pretty sure that I had ITP right away. He took blood out of my arm and my count was 7000. He sent us right to the hospital. I was really scared so the doctor gave me some chocolate ice cream. Then the doctor and nurses put a 'heplock' in may hand so that they wouldn't have to keep poking me. It hurt and I didn't want to do it again. I was good and didn't move, but it got messed up and I had to do it again.

I cry a lot because I'm afraid that I won't ever get to be like other kids and play like everyone else. I'm afraid that other people will laugh at me because I have the heplock in my hand. Sometimes I think that I did something to make myself get ITP. But my Mom tells me it isn't anyone's fault.
I'm really scared because I don't like all of the needle pokes and my Mom and Dad are very worried but try not to show it. Tomorrow we will find out what to do next.

Ralph's Story

My name is Ralph and I am a 55 year old sufferer of ITP. Prior to diagnosis, I was a marathon runner, active member of a gym and hold a second degree black belt in karate (not a good thing if you have a tendency to bruise and bleed). After a succession of treatments with Decadron, platlet infusion, IV gamma globulin (which caused anaphylactic shock and seizures that almost killed me) and finally prednisone, my count bottomed out at 2,000. Just prior to actually having my spleen removed, a remarkable physician in Long Island, New York started me on a new treatment with Danazol. After about one month of treatment, my count went up to 122,000 and is still climbing.

Karen's Story

I was diagnosed in April 1977 at the tender age of 18 with ITP. I had most probably had it for at least six months before they diagnosed me. I had a knee operation in the fall of 1976 and they could understand why I had a hard time clotting. It wasn't until I started bleeding from the nose and mouth that my parents were alarmed. I saw my pediatrician and he took a platelet count. It was 11,000. I was young and ignorant as to what this meant to my life. I was 18 and full of life. The doctor immediately put me on prednisone and I blew up like a balloon. In the meantime my hematologist did a bone marrow test and aspirated the bone marrow with only a topical pain killer, he took it from my sternum. I didn't realize that it was going to be painful until he told me to hold unto the sides of the table.

I went into remission it seems the moment I got pregnant. I am still in remission 6 years later and I forget sometimes about the ITP. It is almost like a bad dream. I wish I had had information like this web site offers 22 years ago. I would not have made some of the mistakes I made mostly out of fear and ignorance.

Life right now is good. I like the fact that I'm not spending a lot of time in chemo rooms and worrying about if I should shake my head after a shower. I still notice any little bruise or spot. I have to remind myself that a certain amount of bruising is normal. I still celebrate that I don't bruise if I accidentally run into a door jam or fall. I celebrate my children and my husband for all the times I had to come first because of ITP.

Rebecca's Story

My name is Rebecca and I was diagnosed in 1992. My situation was particularly scary because I work in a hospital lab and my good friends were hematologists. This ended up being a good thing when a found a compassionate physician who was willing to answer all my questions.

Originally, my counts were not that severe, but after a cold or flu (and I seemed to get a lot of them that winter), the count was down to 6K or less, and of course, I was on prednisone. In the spring of 93, I came into the ER with severe menstrual bleeding. I got the splenectomy (Its very hard to avoid!) and a week later my platelets were back down to 3K.

I was despondent. Even on 60 mgs of pred and they wouldn't go up!?! I found a counselor who helped me using meditation and visualization technique and the power of positive thinking to help me mentally. It did bring my platelets back up to 5-6K, so I could keep working, but mostly it kept me calm and searching for other options. My doctor and I "tried" different things IVIG, danazol, dexamethasone pulsing. But at the advice of my counselor, I quit trying.

I wanted to succeed and finally, I was put on Imuran (azathioprine), and it worked - slowly but surely over months my platelet count went up to 100, then 200K. I tapered off it and my platelets remained high -450K at my last count.

I want to emphasize that each case of ITP is unique, what works for one may not work for another, but there is something that will work for you, you just have to find it and focus on its working!

Christine's Story

Despite encouraging statistics and strong recommendations from my consultants, splenectomy did not appear to work (initially) for me. Within weeks, my counts had crashed to 12. (Before splenectomy they had fallen below 10 on several occasions). The thought of pred all over again, and this time with azathioprine, threw me into depression and near despair. After a brief climb they then crashed to 8. Immune suppression was presented to me as the only option. Then I found this site... Since then things have improved a lot. Encouraged by others' stories, I feel as though I have taken control of the management of the disease. I certainly have not turned my back on conventional medicine (I still see the hospital consultant every month and have counts via my GP fortnightly in between) but I have reviewed my whole lifestyle and researched the condition as much as I am able.

Thanks again, for a wonderful site. I hope this little bit of my (ongoing) story will provide some encouragement to someone somewhere.