← Return to Anyone living with Essential Thrombocythemia with JAK2?

Discussion
lindamarie63 avatar

Anyone living with Essential Thrombocythemia with JAK2?

Blood Cancers & Disorders | Last Active: 1 hour ago | Replies (591)
Comment receiving replies
Profile picture for dmcj @dmcj

@lynnevb

She was having side effects. Bad headache. Itching Joint pain. Her numbers are only 580 Dr said start early for longevity did not recommended Hydro for her, Besremi she is allergic and Pegasus wkly leaves her with zero life.

Jump to this post

Replies to "@lynnevb She was having side effects. Bad headache. Itching Joint pain. Her numbers are only 580..."
janemc | @janemc | May 31 8:24am

@dmcj

Hydroxyurea (HU) is the go-to drug for ET. It's been in wide use for generations, it's readily available and it's cheap.

I'd say, it's high time to ask why it hasn't been tried for your young daughter.

I take a whopping dose (7,500 mg/week) and tolerate it really well. It's brought down my count and freed me from the headaches and exhaustion of ET.

If Pegasus and Besremi are problematic for your daughter, then what's the down side of trying HU? Yes, there is some indication that HU may lose its efficacy after someone takes it for 20 or so years. Still, your daughter needs help NOW and HU may be the answer.

There may be better treatments or even a cure for ET in 20 years!

Please let us know how she's doing.

VIEW AND REPLY