After 3 months on hydroxyurea, I am going to ask to switch to Besremi

Posted by eferret @eferret, Oct 5, 2024

I was diagnosed with PV in March. When my hematocrit leveled off at around 44 after 10 weeks of phlebotomy, my hematologist put me on hydroxyurea because my white cell count was very high.
I started hydroxyurea on July 3. I don't think it is working very well for me. My hematocrit is now over 47, and my white cell count is still high at 18.
I suspect the main reason it is not working is that my JAK2 burden is 91.3 which is very high, and hydroxyurea does not impact JAK2 burden.

Recently the NCCN approved Besremi as a first-line treatment for PV:
https://www.targetedonc.com/view/nccn-guidelines-add-ropeginterferon-alfa-for-first-line-polycythemia-vera
In recent studies Besremi actually reduced the JAK2 burden every month it was used, and after a few years, some people were able to discontinue PV treatments altogether. Studies have also shown that a high JAK2 burden > 50% can lead to a higher risk of myelofibrosis and venous thrombosis.

Maybe this is all pie in the sky, but what I have read about Besremi sounds good to me.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

@preacherswife1977

I went for a blood draw yesterday. Platelets were down from 918 to 875. I haven't heard from dr yet to see if he is going to raise it 50 or not. When is your appointment?

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I have been on hydroxyurea since July.
My white blood count has never been below 11 and recently was 13.
So it has not been consistent. After my first injection of Besremi of 50 mcg a couple of weeks ago, it went down to 9, which is the first time it has been in the normal range since I was diagnosed with pv in March. They have never prescribed Besremi before at my hematology clinic, so I am sort of a trailblazer. I am sure they are going to keep me under very close observation. I thank God for each step that was necessary to get me to this point.

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@eferret

I have been on hydroxyurea since July.
My white blood count has never been below 11 and recently was 13.
So it has not been consistent. After my first injection of Besremi of 50 mcg a couple of weeks ago, it went down to 9, which is the first time it has been in the normal range since I was diagnosed with pv in March. They have never prescribed Besremi before at my hematology clinic, so I am sort of a trailblazer. I am sure they are going to keep me under very close observation. I thank God for each step that was necessary to get me to this point.

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Good luck! Besremi is extremely expensive and has only been out since 2019. Hydroxyurea has been out since the 1960’s. When I read the side effects fro Besremi it scares me. Were your platelets and hematocrit acceptable With hydroxyurea? I find that my numbers always jump around a little with Red, white and hemoglobin etc but a song as they are acceptable I will stay on Hydroxyurea. Good luck.

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@nypara66

Good luck! Besremi is extremely expensive and has only been out since 2019. Hydroxyurea has been out since the 1960’s. When I read the side effects fro Besremi it scares me. Were your platelets and hematocrit acceptable With hydroxyurea? I find that my numbers always jump around a little with Red, white and hemoglobin etc but a song as they are acceptable I will stay on Hydroxyurea. Good luck.

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I think if you read the side effects of almost any drug, including acetaminophen, they will scare you!
It is important to remember that the pharmaceutical companies try to cover themselves and that most serious side effects are rare.

I was due to have my first Besremi injection last week but it had to be postponed because the drug had not arrived. I shall have the first injection on 5 March.
I found the idea of HU scarier than Besremi.
Happy to hear you are doing well on HU and I hope it continues.

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Scary is as scary does, and, as noted in comments above, the longer a drug is in the market, the longer its side effects list grows.

One of the most corrosive things I see in over 10 years in ET support groups is the way people put each other down over their treatment.

HU (and anagrelide) is old, cheap, and effective. (Like most generics, it is manufactured abroad following strict protocols dictated by the feds, so hopefully tariffs and DOGE efforts will not spike prices, create shortages, or cause quality control issues). Is it the best drug for everybody? No.

Besremi (and it's precursor, Pegasys) is new and prohibitively expensive for many in the US. It is used in some European protocols as a first-line treatment for people in childbearing years (HU is associated with birth defects in lab studies). But it has been used more cautiously in older people because of Peg's association with severe depression. Better dosing strategies alleviated that somewhat.

The interferons seem to address the root causes of ET, and remission in a few cases has been noted, but both drugs are so new that long-term remission and cures cannot be declared. And long-term side effects in MPN patients cannot yet be known. But it is a godsend for people who can't tolerate HU or for whom HU has stopped working.

I think it would be great if people could support each other's scientifically-supported treatments whichever med works for them. We're all in this together.

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@garyintlv

I think if you read the side effects of almost any drug, including acetaminophen, they will scare you!
It is important to remember that the pharmaceutical companies try to cover themselves and that most serious side effects are rare.

I was due to have my first Besremi injection last week but it had to be postponed because the drug had not arrived. I shall have the first injection on 5 March.
I found the idea of HU scarier than Besremi.
Happy to hear you are doing well on HU and I hope it continues.

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Yes, agreed! All the drugs side effects are scary and the drug companies try to cover their butts by listing ALL possible side effects. Please keep us posted on your progress. I wish you a great transition 😊

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@nypara66

Yes, agreed! All the drugs side effects are scary and the drug companies try to cover their butts by listing ALL possible side effects. Please keep us posted on your progress. I wish you a great transition 😊

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I went to a Dr for one full yr and feel I lost one full year of my life being put on HU. He doesn't care at all! How you feel and what your side effects are. He drills it in your head I will take this HU for life and in so many words live with the side effects. He has no heart or soul. His PA is identical like she has been trained that way by him. I up and stopped HU 2 wks ago per my PC and have an appt with a different oncologist/hemo March 3 referred by my PCP who can see how sick I feel and how HU has completely screwed me up. I never felt this sick before HU and I am very sick still coming off this med after two weeks. I just pray everyday I am ok til my new appt and this other DR is a good send.. the Dr never called me to ask where I am at or why I cx my last appt. I don't trust him and more than half of his reviews are soo bad! He tells patients that no one ever isn't to second guest him ever! He dx me totally off of blood labs and never a mention of BMB. I feel he has totally ruined me and I pray everyday this new Dr is going to be completely opposite as my PCP claims. Good luck to all.

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Wow that’s some story! Sorry your Dr is not doing right by you. Have you done monthly labs to see if your dosage is correct? Most patients do feel
Like crap until they reach the right dosage and their body adjusts. It is the “safest” of all the ones out there to lower platelets etc. Do you have PV? Please take aspirin until your app. You don’t want to risk a stoke. Keep us posted. Good luck.

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@nypara66

Wow that’s some story! Sorry your Dr is not doing right by you. Have you done monthly labs to see if your dosage is correct? Most patients do feel
Like crap until they reach the right dosage and their body adjusts. It is the “safest” of all the ones out there to lower platelets etc. Do you have PV? Please take aspirin until your app. You don’t want to risk a stoke. Keep us posted. Good luck.

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I have been on aspirin for the past 20 yrs just because, my family has heart problems so I just started taking it myself which I guess turned out to be a good choice. I have ET??? The Dr never did anything but blood labs. I worked in phlebotomy, lab and EKGs and this jerk doesn't want you to understand anything except to just listen to him! HU might be good for many people but a lot of people can't handle different meds. My PCP said the same thing because we all have different tolerance. Three of my other Drs hate HU and all said the med is making me sick. I was always afraid to go off of it but just couldn't handle it anymore plus still feel really bad almost like withdrawals or something. I just pray for the next Dr to be understanding and is more thorough with tests than this other guy. Take care and I hope all works out for you.

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