Continuing asking questions about my husband’s anemia seems to be a disturbing issue for the doctor He at first said that PNH is causing the anemia now he says the anemia is caused by something else Asked him what could it be from and he said he only deals with the blood so he can’t give me an answer and basically to stop asking questions. I am very concerned since my husbands mother was diagnosed with MDS and his sister had AML so I do have questions but it just seems to annoy the doctor.
June 9
Should you be concerned if your blood levels keep going down after starting PNH treatment even though your doctor isn't worried?
It's understandable to feel anxious when your blood levels aren't improving as expected. However, your doctor's lack of concern may be based on their understanding of your specific situation and Show Full Answer
Should you be concerned if your blood levels keep going down after starting PNH treatment even though your doctor isn't worried?
It's understandable to feel anxious when your blood levels aren't improving as expected. However, your doctor's lack of concern may be based on their understanding of your specific situation and how PNH treatment works.
PNH treatment can be complex, and responses vary from person to person. Some people don't feel their full potential even after six months to a year of treatment, and may still need blood transfusions despite being on medication. This doesn't necessarily mean something is wrong.
Here's what might help you feel more confident:
- Ask your doctor to explain what they're seeing in your test results and why they're not concerned
- Learn which specific blood levels are being monitored and what the target ranges are
- Understand when your levels are considered controlled versus not under control
- Discuss whether your current symptoms match what's expected at this stage of treatment
If you're still experiencing symptoms or needing frequent transfusions, it's worth having an open conversation about whether your current treatment is working well enough or if other medication options might better control your symptoms.
Your concerns are valid, and good communication with your care team is essential for managing PNH effectively.
April 20
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