Long term medication Hydroxyurea

I’m 76 and diagnosed four months ago with ET JAK2. Take baby aspirin and 500mg hydrea once daily. My feet were burning and aching especially at night long before diagnosis. Think I probably had ET for a few years already. I had a couple tough weeks with side effects when starting our little chemo pill. My playlets were near one million when I started medication. I started slower every other day per my request. Have to listen to your own body. I’ve had a couple of incidences since with horrible ice pick headaches. I’ve realized that lots of water is our friend. This past week I was dealing with family crisis and didn’t take care of self and water consumption. Damn ice pick again. So drink drink drink. It helps so many symptoms including gerd! I’m meeting with MPN specialist this next month so I will ask about the newer drugs. Had platelets tested today and I’m at 451k. Almost in normal range so something to celebrate today!!
Best to everyone and keep sharing.

@hun8ln2026 HU in my opinion is horrible. Interferons stop progression and ease symptoms. I am dealing with side effects but each week they get better. I am so sensitive to medicines but I actually have hope now! This is the first time in two years that I haven’t had fatigue. I almost feel like I’m on crack lol because I have not felt good in years.

@mdramsey48 HU does work well for many, but, no, it does not slow disease progression, though ET itself is a very slowly progressing cancer, and most of us die with it vs because of it.

Interferons are not widely used in the US because of cost. Most of us cannot afford them. So just have to use the drug that insurance will pay for.

There were also many elderly who could not tolerate Peg because of the depression. Younger people fared better, plus interferon was the only drug that did not cross placenta, so safe for childbearing women. In Europe, where health care is less costly, the protocol was interferon for patients to age 40, HU or interferon for those 40 to 60 (depending on tolerance), and HU for patients over 60.

I think Besremi and better dosing strategies has helped the depression problem?

@mdramsey48 HU is rough but I disagree with your statement that the specialists aren’t using it anymore other than to bring down counts which actually is the main reason for any of these medications. It’s been around since the 1960’s and is the least toxic to your organs and mental status. I hate taking it. My side effects are annoying but tolerable. I had three different specialists tell me to keep the course with HU as long as it’s working and I can tolerate is b/c Besremi and Jakafi have more severe side effects and have not been around that long. I am 60 yrs old with JAK2+ PV Diagnosed 3 1/2 yrs ago. I’m taking Hydroxyurea 6 days a week.

@nohrt4me You are right about the cost Pegasys is $5500 per month and Besremi is around $10,000 before insurance. My cost for Pegasys is $200 but once they are both approved for ET in the US at the end of the month the cost is said to go down. An MPN specialist knows so much more than hematologists, I don’t understand why they don’t at least collaborate. My first hema didn’t believe I had symptoms and classified me as low risk and literally blew me off. My second hema fully understood my symptoms were related to ET and said I was high risk due to a prior arterial clot. It all depends on the doctor so I tell everyone to advocate for themselves like crazy. Are you in the UK?

@nypara66 I’m with a large teaching hospital and that is what my MPN specialist told me a month ago since the interferons are due to be approved for ET on 8/30. I do agree that we are all so different it comes down to what you can tolerate v gets your counts in range. For me, my side effects to interferon are way more tolerable than HU or anagrelide. The instant spike in my otherwise perfect blood pressure was a little terrifying but that has since calmed down along with the other side effects. Best!

Hello @susita and welcome to Mayo Connect. Congratulations on your super blood results yesterday! You’ve had a very good response to taking HU for your ET. I can’t help but think your positive attitude can be attributed, in part, to your overall outcome. ☺️

Thank you so much for sharing your experiences and what you’ve learned over the few short months after your diagnosis. Drinking plenty of water can really make an impact on so many facets of our health. You were able to pick up on that quickly by correlating the headaches from the medication with being dehydrated. I learned that too with meds I was taking a few years ago. I no longer have to take medication but still keep up with extra hydration during the day. I can tell ‘when I’m down a quart’. ☺️

You mentioned that your feet had been burning and aching for years before your diagnosis. Have those symptoms improved now that your platelet levels are decreasing?

@mdramsey48 "Cost is said to go down ..."

By how much? Even if they cut the cost by half, most people could not afford it. It will be a hard sell for insurance companies to pay for it, especially when generic HU costs $40-$80 per month.

Perhaps we'll be pleasantly surprised, but not holding my breath.

I am in the US, but have had ET x 18 years and talked to patients in other countries where interferons are used more often, especially for younger people. Even in countries where HU is still the first-line drug, it is possible to switch to the interferon without going broke if a doc demonstrates HU is ineffective or has too many side effects.

@mdramsey48 I have fatigue so bad I sleep most of the day and then awake all night. Got to get off this med. HU. I'm seeing new Dr on Sept 15th will ask about changing my med to interferon. Thank you for your information 🙏

@hun8ln2026 I am so sorry! The instant I stopped HU I felt so much better. I was also at the point I couldn’t get out of bed because of the fatigue and couldn’t move because of the bone and joint pain. I also had fevers and chills. The last day on HU I took 2 hydrocodone 2 Percocets, and tramadol and still couldn’t move. It was actually terrifying! Anagrelide was similar with some cardiovascular issues. Seeing an MPN specialist is so important. Good luck!