Managing Low Platelet Counts: A Family's Struggle with Rare Disease

Thrombocytopenia?

Hello Doctor: My mother has been experiencing low platelet counts and visited a nearby hospital, where she was seen by an oncologist.
Initially, her blood tests showed a platelet count of 33,000 and a white blood cell count of 8,000 to 9,000, while other routine blood tests were normal.
The doctor indicated that this was due to an issue with her autoimmune cells, leading to the drop in platelet count.
The physician prescribed steroids along with a gastric medication for my mother.
She took the steroids three times a day, three tablets each time, along with two gastric tablets.
After two weeks, during her second follow-up, her platelet count had only risen to about 43,000, showing no significant improvement.
Consequently, the doctor prescribed the same medication for another two weeks.
At her third follow-up, her platelet count dropped again to 34,000, indicating that the medication was not effective.
The doctor then changed her medication to a combination of steroids, mycophenolate mofetil, and gastric medication for another two weeks.
(During this period, she also underwent a bone marrow biopsy at another hospital, which returned normal results.) At the hematology-oncology department of the other hospital, the doctors were informed of her medications and treatment status.
Blood tests there revealed her white blood cell count was abnormally low at 1,500, and they advised monitoring her white blood cell levels closely due to the use of mycophenolate mofetil.
They instructed that if she experienced a fever that evening, she should go to the emergency room immediately.
That night, my mother developed a fever, so we rushed her to the emergency room and informed the doctor of her medications.
The emergency physician conducted blood tests and found her white blood cell count had dropped to 1,300.
The doctor stated this was very dangerous, advised stopping all medications temporarily, and recommended hospitalization for observation until her white blood cell count gradually increased.
The attending physician was notified that my mother had stopped all medications during her time in the emergency room for two to three days, but they noticed bleeding in the sclera of her eyes.
Consequently, the attending physician prescribed steroids again, stating that she needed to take them since her eyes were bleeding.
My mother was hospitalized for a total of one week and two days, during which she took the prescribed medications daily.
When she was ready for discharge, her white blood cell count was at 2,000.
The doctor said she could be discharged to observe her condition at home, although her platelet count was at 40,000.
After returning home, her white blood cell count increased to 2,500 within two days, and the doctor indicated that her white blood cell count would gradually improve, while her platelet count rose to 50,000.
However, during her second follow-up, her white blood cell count increased to 4,000, but her platelet count dropped to 10,000.
As of today, her white blood cell count has decreased again to 3,300, while her platelet count has risen to 80,000.
My mother is extremely worried about the instability of her condition, which fluctuates significantly, accompanied by persistent bruising all over her body.
Recently, she discovered a lump in her chest while bathing and went to the breast center for examination.
The doctor indicated that there is a lump inside her breast and suggested surgery to remove it, but due to her low platelet count, the doctor expressed concern about excessive bleeding and stated that surgery would be too risky.
They advised us to consult a hematology-oncology specialist for further recommendations.
My mother is feeling overwhelmed; she is trying to treat her low platelet count but has not managed to stabilize it, and now her normal white blood cell count is also low.
With the recent discovery of a lump in her breast, we truly do not know what to do.
Doctor, what should we do? As family members of the patient, we are really at a loss.
We have been following the doctor's instructions regarding medication, but why is her condition worsening? We are genuinely unsure of how to proceed given the current situation.

A-Kai, 20~29 year old female. Ask Date: 2012/05/03

Dr. Jian Yingxiu reply Rare Disease

Your mother's condition is quite complex, but it is still important to discuss with the hematologist whether to switch to other stronger medications for treating thrombocytopenia or to consider direct transfusions to manage the need for surgery.

Reply Date: 2012/05/03

More Info

Managing low platelet counts, especially in the context of a rare disease, can be a daunting experience for both patients and their families. Your mother’s situation, characterized by fluctuating platelet and white blood cell counts, is indeed complex and requires careful management and monitoring.

Low platelet counts, or thrombocytopenia, can lead to increased bleeding risks, which is particularly concerning given your mother’s recent experiences with bruising and the discovery of a lump in her breast. The fact that her platelet count has been consistently low, despite treatment with steroids and other medications, suggests that there may be an underlying issue that needs to be addressed.

Understanding the Condition
Thrombocytopenia can arise from various causes, including autoimmune disorders, bone marrow disorders, or even as a side effect of medications. In your mother’s case, the initial diagnosis of an autoimmune issue suggests that her immune system may be mistakenly attacking her platelets. This can complicate treatment, as immunosuppressive therapies like steroids can sometimes lead to further complications, such as the drop in white blood cell counts that you’ve observed.

Treatment Options
1. Medication Adjustment: It seems that your mother has been on a regimen of steroids and other medications like移戶寧 (likely referring to a medication that modulates immune response). Given the fluctuations in her blood counts, it may be beneficial to revisit her treatment plan with her hematologist. They might consider alternative therapies, such as intravenous immunoglobulin (IVIG) or anti-D immunoglobulin, which can help raise platelet counts in certain cases.

2. Monitoring and Support: Regular blood tests are crucial to monitor her platelet and white blood cell counts. If her white blood cell count remains low, she may be at increased risk for infections, which is why it’s essential to seek immediate medical attention if she develops any signs of infection, such as fever.

3. Addressing the Breast Lump: The discovery of a lump in her breast is concerning, especially in the context of low platelet counts. It’s understandable that the surgical team is hesitant to proceed with surgery due to the bleeding risk. However, it’s important to have a thorough evaluation of the lump, which may include imaging studies or a biopsy if safe to do so. Discussing this with both her hematologist and the surgical team can help find a safe approach to address the lump.

4. Consulting Specialists: Given the complexity of your mother’s case, it may be beneficial to seek a second opinion or consult with a specialized center that focuses on hematology and oncology. They may have more experience with rare cases of thrombocytopenia and can offer insights into potential clinical trials or advanced treatment options.

Emotional and Family Support
It’s completely normal for you and your family to feel overwhelmed by the situation. Managing a loved one’s health, especially with a rare disease, can be emotionally taxing. It’s important to seek support, whether through counseling, support groups, or simply talking with friends and family.

Conclusion
In summary, your mother’s case requires a multi-faceted approach involving careful monitoring, potential medication adjustments, and collaboration between her hematologist and other specialists. Open communication with her healthcare team is vital to ensure that all aspects of her health are being considered and managed effectively. Remember, you are not alone in this journey, and seeking support for both your mother and your family is crucial as you navigate these challenges together.

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