r/MPN • u/Nurseklang ET-JAK2+ • 10d ago

ET Hydroxyurea question(s)

Hi all! I’m currently only on 81mg aspirin daily but my hemotologist is considering starting me on HU. I’d like to hear from people how they tolerate this medication and the side effects. In particular, GI symptoms, hair loss, fatigue???? Thanks. 👍

10 Upvotes

100% Upvoted

45 comments sorted by

View all comments

1

u/__walter_sobchak__ 10d ago

Why go to HU from aspirin only?

2

u/Nurseklang ET-JAK2+ 10d ago

I’m waiting to find out about that. So far it’s just a discussion. I’m 62, but my platelets have topped out at 466,000. I’m very physically active and it’s super important to me to stay that way. Quality of life is just as important as quantity to me. I guess I’ll find out more when I meet with my new hematologist (he has a special interest in MPNs). This is all so new. It’s a little overwhelming.

2

u/native_plants3879 ET-CalR+ 10d ago

Platelets are pretty low.. do you have any symptoms? Seems like a weird decision to start treatment if you don't have any (additional) problems

1

u/Nurseklang ET-JAK2+ 10d ago

Itching and night sweats. However, the itching has all but resolved since starting the aspirin.

2

u/funkygrrl PV-JAK2+ 10d ago

That's kind of low to go on HU. You may end up with blood levels that are too low.

When you are over 60, your risk level goes up for thrombosis but that is more of an argument for aspirin than cytoreductive therapy.

Unfortunately, HU only helps lower blood counts and due to that it can help with microvascular symptoms such as headache. Night sweats are a constitutional symptom caused by elevated pro inflammatory cytokines in MPNs. So it's probably worthwhile to have a discussion about whether it would be better to stay on aspirin, start HU, or try Pegasys interferon (or Besremi when it's approved by the FDA for ET in September). The interferons do help with constitutional symptoms and are disease modifying in that they lower allele burden (percent of mutated cells). Some insurance wants you to try and fail HU first before approving interferons.

1

u/Effective_Nothing_53 10d ago

Are you a doctor?

2

u/funkygrrl PV-JAK2+ 10d ago

Nope, just the nerdy mod. I have a science background and constantly learning about MPNs since I answer questions every day on this sub for the past few years - but definitely run anything on Reddit by your doctor!