ITP: Q&A

Answers to your most pressing questions about ITP

Beating brain fog
Q. Since my ITP was diagnosed last year, I’ve been struggling with brain fog. Is it the ITP or my treatment? Is there anything I can do about it?
A. Brain fog and fatigue may affect up to 25% of ITP patients. Sometimes this may be associated with a reduction in the dose of prednisone or may occur after an IVIG infusion. While we don’t know why fatigue may accompany a low platelet count, we’ve found that treatment to raise the platelet count may bring relief. You can help prevent the fog from taking hold of your life by leading an otherwise healthy lifestyle and not ignoring other medical problems, such as hypertension and diabetes.

Putting up with heavy periods
Q. I’ve read that my heavy periods can be related to my ITP. Do I just have to put up with them?
A. When their platelet count drops, menstrual periods can be much heavier in some patients. There should be no need to “just put up with them,” however. Since excessive bleeding should not occur once the platelet count is over 30,000, treatment to raise the platelet count is often the first step. You may also want to talk to your doctor about other therapies that can be used to reduce menstrual flow, such as birth control pills, intrauterine devices and anti-fibrinolytic medications.

Easing bleeding fears
Q. My husband says I’ve become obsessed about my platelet counts, but I can’t help it. When my platelet levels drop a little, I get pretty anxious.
A. While it is difficult for a spouse to have to deal with the ups and downs of a partner with ITP, you can help reduce anxiety by better understanding your condition. Patients need to know that even at surprisingly low platelet counts (e.g., under 20,000), bleeding is often minimal—as platelet counts fall, the body tries to compensate by increasing platelet size, thereby reducing bleeding. While it is human nature to become anxious about anything that goes wrong with us, most people with ITP can and do live normal lives.

Make your home a haven
Q. Are there any changes I should make at home to avoid problems due to ITP?
A. Because many patients feel frustrated that their ITP is out of their control, it is all the more important to make their dearest place, their home, a refuge of safety. It makes good sense to reduce the potential for injury by avoiding throw rugs, reducing sharp edges on furniture or other household objects, and not placing heavy items on ledges where they might fall. Aside from reducing these physical risks, the home should be a haven for the stressed psyche. It should be peaceful, orderly, supportive and calm to enable the patient to deal with the many challenges faced by ITP patients.

Spotting remission
Q. Can I stop taking my medication when I’m feeling good?
A. The good news is, many ITP therapies—particularly those that don’t include prednisone— can improve one’s platelet count and make one feel “normal” again. As in any other disease, one should not stop medications when one attains the desired goals; to do so will often cause the platelet count to drop. Medication adjustments should be done only under medical supervision. However, when you feel well and your platelet counts are good, it is important to discuss with your doctor and continue to monitor your platelet counts. If your counts are stable in a normal range, you may be having a remission of your disease and your medications may be reduced or even stopped.

Living low?
Q. I am considering stopping treatment and living at a lower platelet count. Is that a bad idea?
A. The decision to reduce or stop therapy and live at a lower platelet count is an important discussion to have with your doctor. Sometimes it is a good idea and sometimes not. Each person has their own threshold platelet count, below which bleeding becomes more apparent. Many patients do perfectly well with platelet counts between 15,000 and 20,000 and can live a normal life off medication with minimal bleeding or bruising and no worry about major bleeding. Again, work with your doctor to determine the platelet count that is high enough to prevent bleeding and also to minimize the psychological burden of ITP.

Our expert: David J. Kuter, MD, Chief of Hematology at Massachusetts General Hospital and Professor of Medicine at Harvard Medical School, both in Boston, MA.


ITP basics
What is ITP?
ITP causes & risk factors
ITP symptoms
ITP diagnosis
Meet your ITP healthcare team
ITP: Questions to ask your doctor

 

ITP features
Take control of ITP and live the life you love!
ITP: Q&A
Understanding ITP
ITP symptoms and early detection
Platelet counts: know your numbers
Be prepared for an emergency with ITP

 

Share |