Myelofibrosis signs and symptoms
Myelofibrosis (MF) often develops slowly, so early on, you may not feel many symptoms. But as scar tissue builds up and your bone marrow is unable to make enough healthy blood cells, it can cause:
Image
Anemia
Image
Weakness
Image
Bone Pain
Image
Fatigue
Image
splenomegaly (enlarged spleen)
Sometimes other parts of your body, like your spleen, try to help raise your blood cell counts by taking on the task of making them. As your spleen works harder to make more blood cells, it may start to grow in size. This is called splenomegaly. Symptoms of splenomegaly can include feeling pain or fullness below the ribs on the left side.
These are not all of the possible myelofibrosis symptoms. It’s important to talk to your doctor about what you’re experiencing.
Signs that myelofibrosis is progressing
What you may feel
As your blood cell counts continue to drop, you may start to notice some changes. If your symptoms are getting worse or you’re noticing new ones, it may mean your myelofibrosis is progressing. You know your body best—if you notice any changes in symptoms, even small ones, don’t wait to let your doctor know. They might be important. Feeling bad doesn’t have to be your new normal.
Image
Pain or discomfort under your left ribs and feeling full too quickly
Under your left ribs, next to your stomach, is your spleen. With myelofibrosis, your spleen may try to help your body make more blood cells. This extra work causes the spleen to grow, which puts pressure on nearby organs. Symptoms can include early feelings of fullness when eating, abdominal discomfort, and pain under the ribs on the left side.
Image
Other new or worsening symptoms
Myelofibrosis is a progressive disease, which means it can get worse over time. If you’re noticing any new symptoms (like feeling more tired/weaker than usual or bruising easily/bleeding more) or if your current symptoms are getting worse, it could be a sign your MF is progressing.
These are not all of the signs that myelofibrosis is progressing. It’s important to talk to your doctor about what you’re experiencing.
What your doctor may notice
How you feel isn’t the only way to know your myelofibrosis is progressing. Your doctor will also look for clinical signs, like dropping platelet counts and red blood cell counts.
Image
You’re developing cytopenias
What are cytopenias? A cytopenia is a term that means low blood cell counts. Low blood cell counts may be caused by myelofibrosis progression or medications taken for MF. Many people with MF will have low blood cell counts, especially low red blood cell counts (anemia) and low platelet counts.
When you have low platelet counts, it’s called thrombocytopenia, and it may mean your MF is progressing and needs attention.
Image
You may need more blood transfusions
When your red blood cell counts drop low enough, you may have to get transfusions to help quickly raise your red blood cell counts and reduce symptoms of anemia (for example, if you’re more tired or weaker than usual). However, if the transfusions start helping less and less, you may need transfusions more often over the course of your disease.
If this happens, it may be a sign your myelofibrosis is progressing and should be discussed with your doctor.
Image
Your current medication may need to change
It’s not uncommon for your treatment for myelofibrosis to change based on how your MF and platelet counts are responding. If your doctor says they need to change your treatment, it’s important to ask why because it could mean your MF is progressing.
There are different treatments for when your MF progresses; be sure to ask about all your options.
It’s important to track your myelofibrosis symptoms
Your symptoms tell a story about your myelofibrosis—tracking them over time helps you spot important changes your doctor should know about. Write down how you're feeling, changes you have experienced while you’ve been treating your MF, and goals for your treatment. Always talk to your doctor if you have any symptoms that bother you or won’t go away.
Image
Get a Symptom Tracker
Use this symptom tracker to record your symptoms and how often they happen so you can have productive conversations with your doctor about your MF.
