I was diagnosed with ITP after going into the doctor for back pain after a recent gall bladder surgery. Since he and I both thought that was the cause of the pain, we were both mystified at the pain since there was no apparent cause since we both believed the back pain was from my gall bladder. I also mentioned to him bruising on my hand after playing a tambourine and unexplained bruises on my arms and legs. He decided to start with a CBC (Complete Blood Count) and go from there. About a week later, his office called and told me my platelets were low and referred me to a hematologist..
I was relatively unfamiliar with the term, platelets, though I knew it had something to do with the blood. As I came to find out, platelets are small, irregularly shaped part of your blood, needed for your blood to clot. The only thing my physician’s office would tell me was that my platelets were a little low and the cause should be investigated. My first consultation with the doctor who also turned out to be a hematologist, who treats blood disorders, offered many causes for my low platelets; leukemia and lymphoma for example. . He informed me the other cause for low Platelets was ITP. He then said there were 2 different types of ITP; acute and chronic. Acute is short-term, usually happening in children and adults who may be on medication such as blood thinners and quinine. But ITP is a diagnosis of elimination and to be certain, I was to have more blood tests, a CT scan, a bone marrow biopsy, and a bone scan. He seemed to be confident of his preliminary diagnosis but had to make sure there were no other underlying causes.
The CT scan, bone scan and blood tests were relatively painless, though the concoction you drink before the CT scan assaults your taste buds. But the bone marrow biopsy is painful as they have no way of anesthetizing the bone, though I was given something to sleep with and helped somewhat. The bone marrow biopsy or aspiration is performed because platelets are formed in the bone marrow. When all my tests came back negative, my doctor’s prediction became correct, I had ITP.
The most difficult thing for me and my family was not knowing what it was and how it would affect our lives. What were the treatments, was there a cure and what was the best course or courses of action to take?
ITP or Idiopathic Thrombocytopenic Purpura is an autoimmune disease which the platelets in a person’s blood are decreased which affects your blood’s ability to clot. Idiopathic means the cause is unknown, Thrombocytopenic refers to the blood lacks the platelets and purpura is the bruising which often happens in patients with this disease. While no one knows the cause, there are some factors which may contribute, such as viral or bacteria infections or in conjunction with other diseases such as lupus.
ITP is rare, affecting a small amount of the population, (approximately 200,000 adults, with 2 times more women than men) In an autoimmune disease the body literally attacks itself, and in the case of ITP, it is mainly the spleen and in some cases the liver. A normal platelet count is anywhere from 150,000-400,000 and they were hovering at 50,000 at the time of diagnosis and fluctuated throughout treatment. A platelet level of 30,000 is considered a dangerous level and anything above that,most people opt for not treatment. Sever cases are under 10,000 and most are hospitalized because of the threat of bleeding on the brain.
There is no known cure for ITP and since it is rare and relatively non-life threatening there is not that much research dedicated to it. In some cases, it is asymptomatic, often caught on a CBC, requested for other reasons, such as a routine physical.. But, there can be symptoms such as spontaneous bruising (purpura), fatigue and depression, petachia (tiny red dots on skin), bleeding in the mouth and gums and nosebleeds and for women, heavy menstrual bleeding.
The hematologist prescribed Prednisone which helps raise the platelets by essentially shutting down the body’s immune system. which keeps the spleen from seeing the platelets as foreign and then raises the platelet count. Hopefully, after a taper of the Prednisone, your platelets will have been jump started so to speak, and they will maintain a healthy level.
That was not the case for me, that year I was on a Platelet roller coaster, having blood drawn weekly and playing the numbers game. If they dropped, my dose of Prednisone went up and if they went up, I would being tapering off of the Prednisone.
In the case of Prednisone, I found the treatment worse than the disease. I continued my research, reading and learning all I could. I found different treatment options available. They were Winrho (anti-d antibody) and Ivig, IgG (gamma globulin), which are both blood products, but which both offer a temporary solution. Other treatments were chemotherapy and drugs used to suppress reactions to organ transplants, neither of which seemed right for my situation.
The other option was a splenectomy, which I was reluctant to do because I had just had surgery the year before and I wanted to beat this thing into remission without surgery,. And there was no 100% guarantee but as time progressed and with my doctor’s continued patience, I opted for the splenectomy. It did have a 60% success rate and that was better than the other treatments had offered and though it may not be a permanent solution since the initial response rate is high and can decrease with time, I was willing to take that chance.
Soon after my splenectomy my doctor placed me on a slow taper of the Prednisone and my platelets still remained at around 40,000. He was a little concerned and upped the dose. The next week he began me on the slow taper and my platelet levels were 125,000, the highest they had been off of the steroid, since I was diagnosed. In the following months, my platelets stayed at a healthily 175,000 to 250,000 and I now have annual blood screens. It has been 3 ½ years since my splenectomy and continued healthy platelet levels.
There are numerous resources in the Internet. One I found extremely helpful is www.PDSA.org (Plateles Disorder Support Association). The site has a discussion board with people with varying levels of ITP on there all willing to help you sort through the treatments and questions you will have. ITP affects each person differently and since it is not widely known, there are not many support groups out there.
