I switched doctors over this. When CalR ET was diagnosed for me in 2020, then age 68, I began with a blood specialist who insisted there was no alternative for me other than HU. I saw an MPN specialist for a second opinion and switched to him. He said HU is the drug of first choice for ET but there are alternatives. I've been on Anagrelide ever since. It keeps my platelets out of dangerous range without as many side effects as I had with HU.
September 10
Mine crept back up after about 2 months off of Hu, restarted last week, pretty bad nausea and fatigue for the first week but it has settled. Platelets are already going back down, slowly.
Still in the 700's but less than last fortnight!
September 9
Will your platelets start increasing if you stop treatment with the HU? Just curious?
September 9
Besremi (ropeginterferon alfa-2b) is an interferon therapy that's self-injected, and it's worth knowing that it's primarily FDA-approved for polycythemia vera (PV), not ET. However, interferons are sometimes used off-label for ET, so this is definitely a conversation to have with your hematologist or MPN specialist. Common Show Full Answer
Besremi (ropeginterferon alfa-2b) is an interferon therapy that's self-injected, and it's worth knowing that it's primarily FDA-approved for polycythemia vera (PV), not ET. However, interferons are sometimes used off-label for ET, so this is definitely a conversation to have with your hematologist or MPN specialist. Common side effects of interferon-based therapies can include:
- Flu-like symptoms — fatigue, fever, chills, and muscle aches, especially early on
- Mood changes — some people experience depression or irritability
- Injection site reactions — redness or soreness where injected
- Fatigue — this can be significant for some people
- Nausea or digestive issues
The good news is that many people find side effects improve over time as the body adjusts. Since you're JAK2 positive, 68, and not tolerating HU, your doctor may also consider other options like anagrelide or ruxolitinib. Anagrelide specifically targets platelet reduction, which could be relevant given your platelet levels.
Everyone's response to treatment is unique, so working closely with an MPN specialist is really key to finding what works best for you.
September 8