Hi there, my name is Alesia, I'm 52 years old and was diagnosed with ITP in the middle of May. If you could bear with me for a few minutes, I'd like to share my story. I've got quite a few questions and concerns and I'm hoping that I may be able to get them answered here in this forum.
On May 12th, out of nowhere, my husband noticed a large purple bruise (about the size of a golf ball) on my arm. It actually appeared to look more like a clot as it wasn't flush with my skin. He asked had I hit my arm on something and my reply was no. The following morning after taking my shower I noticed on my left elbow an extremely large bruise. I'd say it probably extended about 3" above my elbow to about 2" below my elbow and almost the width of that area. The next thing I noticed were additional bruises on my body and red and purple dots covering my legs. I then looked in my mouth because I could feel something on my check that felt like a canker sore. To my horror, it was black in color and looked more like a blood blister and I had about 20 more black spots covering my gums, checks and tongue. As you can imagine, I totally freaked out and called for my husband. My immediate thought was that I might have cancer in my mouth. Putting all these issues together we both felt like seeing a doctor was a good idea. I work out at a gym about 5-6 days a week and had plans that morning to work out with a friend, so I went to the gym first. I wanted to show her what was going on and get her opinion. On the way to the gym I could feel more blisters popping up on my tongue. As she and I were talking she watched a bruise just appear on my shoulder. I had a massive headache so we checked my blood pressure and it was 188/93. Her recommendation was that I head straight to the ER which is just around the corner from my gym. I was quickly taken to a room and saw an ER doctor almost immediately. He looked at me and said he suspected that I had a platelet issue. He would have blood drawn and depending on the level of my platelets I would either be gong home or I could be admitted into the hospital. He returned to say that the lab ran my tests twice and that I definitely wouldn't be going home. My platelets were at 6,000 and I had blood in my urine. To be honest, I wasn't sure at that point what exactly was the function of platelets. Another doctor (a hematologist) came to talk to me in the ER to explain what was going on with my body). I was admitted to the cancer floor of our hospital. The first course of action they took was a CT Scan to check if I had any bleeding in my brain. I did not. My first concern because of all the bruising was perhaps I had leukemia. I got assigned a hematologist/oncologist who would be taking my case. His course of treatment while I was in the hospital was to start me on 60mg of Prednisone, an IVIG infusion and a platelets transfusion. My platelets didn't respond very well to the initial treatment. The following day he increased the prednisone to 80mg and throughout my stay I received two more IVIG infusions, two more platelets transfusions and a bone marrow biopsy. At one point while I was in the hospital my platelets actually dropped to 5,000 which was lower than when I was admitted. I know my nurses were pretty convinced that I had leukemia and frankly, so was I.
The results of the biopsy showed that my bone marrow was consistent with ITP with good platelet production, but areas of MILD HYPOCELLULARITY. Does anyone know what that means? I only learned of this after receiving copies of my medical records. The report also states the following:
Hypocellular marrow, 3% for age with maturing trilineage hematopoiesis and adequate megakaryopoiesis
Marked peripheral thrombocytopenia
Flow cytometry left shifted maturation
I've tried researching what those findings mean on the Internet and anything I find is to scientific for my comprehension. Im not sure if I should be concerned with any of those findings or not?
I ended up staying in the hospital for a week as it took my platelets that long to get up to 50,000. Upon my release I began to see my hematologist a couple of times a week to have my blood checked. They would go up some and then drop again. He stated to me that 80% of patients respond very well to the treatment I received in the hospital and I fell into the 20% that doesn't. We talked about the possibility of having to have my spleen removed (he doesn't want to go this route), however, I received 3 vaccinations just in case that became the outcome. I continued on the 80mg of prednisone for a month and then he decreased it to 60mg. On June 3rd, I received the first of four Rituxin infusions which I had every Friday. My platelets have been slow to increase and there have been times when they've fallen (not to dangerous levels).
This past Friday, out of nowhere, I had several very red spots with one being very large which was a clump of blood blisters appear on my arm. I went in Monday to have my blood checked and my platelets had dropped by 8,000. I go back Friday for another check and to see my doctor.
I'm finding myself getting very frustrated, a little overwhelmed and somewhat depressed. As this seemed to happen to me initially overnight any time I see a new bruise or something unusual with my skin I worry that I'm going to wake up and be right back where I was in the beginning of the disorder. I'm now totally off the prednisone.
Does what I describe sound familiar to anyone? Does the treatment plan I've received sound adequate and would anyone recommend getting a second opinion? The bone marrow findings I'd really like to be able to understand and I hope maybe someone on here may know what they mean.
Thank you so much for taking the time to read this long story! I appreciate it and any insight would be greatly appreciated.
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