Roller Coaster

My name is Chris and I'm 34. I guess you could say I've had ITP for 8 years now although my platelet count has been well over 200,000 for most of those years.

I was first diagnosed in October 1989 with ITP. I noticed bruises on all over my arms and legs after moving furniture around one weekend. Turned out my count was 6,000. What a nasty education process. Words like leukemia, AIDS and the like were tossed around as possible causes. A few tests followed and all pointed to ITP. My body was cranking out "awesome" platelets, but the immune system kept chewing them up and spitting them out. I had no spontaneous bleeding like nose bleeds or mouth sores.

I was placed on steroids, the dreaded PRED, immediately. 20mg then 40, then up to 100mg. My count raised to nearly 100,000. Every attempt to wean me from the PRED resulted in a dramatic drop to around 10,000.

The decision was made to take out the spleen. So I went back on PRED to get my count to 100,000 and the spleen was removed. It weighed over 5 pounds! Within a week, my count sky rocketed to over 400,000. I was weaned from the PRED and the count stayed at 300,000. All of this occurred over a 2 month time frame. By December I was healed from the surgery. I stayed at the 300,000 level for about 6 years.

One curious note is the surgeon said he wanted to take a look at my liver. No one even suggested alcohol use may have caused it, but that was the implication. I didn't have a second thought and resumed drinking after the PRED was out of my system for another 3 years, but decided, "Hey, why take a chance" and stopped all alcohol consumption.

In March 1995, the bruises came back. I was overwhelmed. My wife and I had a 6 month old son and we were on our way to my parents 35th wedding anniversary the next day. We couldn't believe it was back. The doctors never told us it would come back and I didn't research anything after I was originally "cured". In retrospect, that was a naive assumption.

This time the count was 2,000. The PRED didn't even work as well as before. I got up to around 10,000 but that was it. I had several bleeding episodes (nasal and mouth sores). I had a series of gamma gobulin treatments to get out of the danger zones when I bled for any length of time. All of this occurred within a 2 month time frame. Nothing else was working, even the vitamin C I was taking (2,000 a day). So I went for the chemo treatment. Cytoxin. It is not a harsh one as far as chemo goes. But it's still chemo and it stinks.

After the first treatment, the count stayed low. I was still taking the pred. This is when it started getting scary. On my Wife's first official Mother's Day in May, 1995, I got sick. The chemo had left me susceptible to infection. Well, I got awfully sick that night and it turned out that most of what came up was fresh blood. We took a trip to the ER.

My platelets didn't even register. I was throwing up uncontrollably, but finally there was no more blood coming up. An Divine act of God, I'm sure. It turned out I had ripped my esophagus. We were certain it was due to an ulcer brought on by the PRED. Thank the Lord it was something that could be mended. An ulcer with no platelets would not be fun. They fixed the tear and then gave me some platelets and gamma gobulin again. I was out of the woods. They got me off the PRED ASAP.

Finally, things started to get better. I had my second chemo treatment and within two weeks my platelets jumped to over 200,000. I didn't have any more Chemo treatments and the platelets have been at well over 200,000 since....until yesterday.

While on a trip to my parents house in sunny California, I noticed the famous dots. Upon return home, it turned out the platelets were down again. It's 11/13/97 and I'm at 29,000. After a long talk with my doctor, the same hematologist as episode #2, we decided to go straight to chemo without the PRED. I've started taking Vitamin C again and will report back on anything else.

Oh, and by the way, my father was diagnosed with ITP 6 years ago. He's been between 50,000 and 100,000 since. He is taking no meds for it other than Vitamin C and he has been an avid Vitamin C consumer for decades. They claim there's no genetic link. I have not lived with my folks since 1981 so it's hard to believe there's an environmental link. Don't you just hate the word, "idiopathic".

If anyone else has similar experiences, I would like to hear from you.

God bless and remember, "Coincidences are God's way of remaining anonymous",

Chris