Connect
← Return to Long term medication Hydroxyurea
Discussion
Long term medication Hydroxyurea
Blood Cancers & Disorders | Last Active: 12 hours ago | Replies (86)Comment receiving replies
I am 82 and was diagnosed with ET JAK2 in 2022. I started with 500 mg daily of Hydroxyurea. I had headaches and was lightheaded. I was switched to every other day which helped. I currently take it four days a week. I am on a blood thinner for AFib so I cannot take aspirin or anything other than Tylenol. I have hypothyroidism.
My problem is daily headaches and my arthritis has gotten much worse. My hematologist told me to stop taking HU for a few weeks to see if headaches continue. They are continuing daily. She mentioned a possible medication change. I researched Pegasys and Besremi, They also have many side effects. So I am very hesitant.
Best wishes, Eileen
Replies to "I am 82 and was diagnosed with ET JAK2 in 2022. I started with 500 mg..."
@eileen11108 I am 78 and diagnosed with PV 6 yrs ago. Been in HU for a yr along with phlebs as needed . I just started Besremi and will be slowly going off HU. Yes, a lot of scary side effects are possible. Just like HU did, but I have been fine on it. Besremi is a drug designed to reduce the JAK 2 burden so I decided to try it. Time will tell if it is the right choice. The good news is you do a painless injection once every two weeks. That’s it.
@eileen11108
This could be my post as I have AFIB on Eliquis, thyroid issues and ET with Jake 2. I am now taking HU 3 x a week 1 each day numbers slowly climbing up but not to 440 yet. Doctor said if needed she would increase 1 pill at a time to keep numbers below 440. Was a year in May when treatment started. I have had high blood pressure for years but a month after staring HU I spent a night the in the hospital because of AFIB my first time. Take care
Connect
@eileen11108
You're dealing with a lot, eileen11108.
Just wanted to comment that unfortunately headaches are often part of ET itself. Our platelet-heavy blood kinda stalls in the tiny blood vessels in our heads. Even a little extra pressure there means discomfort.
ET also increases chronic inflammation in our bodies, which isn't delightful for those of us with arthritis.
We each experience ET differently. In my case, I wake up with a blinding headache that eases after I've taken my morning doses of aspirin and HU. And as I start walking dogs and tackling chores, I feel less constrained by my arthritis.
Fingers crossed you and your doctors can find a way to relieve your headaches. Being in pain all the time is tough.