Hello all. I am a 59 year old woman, diagnosed with PV three years ago and recently diagnosed with low iron deficiency/ low iron saturation levels. Treatment has been phlebotomy and aspirin. Recently diagnosed with low iron saturation level; Hematocrit is 55; last phlebotomy was Sept 2024. Doctor strongly recommends Hydroxyurea, as he will no longer do phlebotomies. I am terrified to take that medication.
Anyone my age have success with Besremi, and if so, how long did it take for hematocrit to be stabilized.
Thank you.
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Mamabear2222
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I am 10 years older than you and have done quite well on Besremi. I was intolerant of and refractory to hydroxyurea. Besremi has been more effective and much easier to tolerate for me. I feel better on Besremi than before i started on the medication. In fact, I feel better now than I did 10 ,years ago. Besremi has also reduced my JAK2 VAF from 38% to 10%.
I am on a low dose of Besremi, 175mcg. This is my max tolerated dose. Fortuntalty, I am maintaining a complete hematologic response , needing a phlebotomy only 1x/year. It took about 8 weeks for me to reach targets but my situation was different than yours. My MPN profile is also likely different.
Unless you have a clear medical contraindication, Besremi can be an excellent first-line choice to treat PV. It is recognized as a preferred treatment option in the NCCN guidelines. It should be the patient's preference that drives the decision whether to use one of the two preferred treatment options, HU or BES.
Suggest that you push for Besremi if that is your preference. There is no reason not th pursue this unless there is a contraindication. Note that some hematologists are not experienced with MPns nor with using the interferons to treat them. You may need to consult with a MPN Specialist to ensure optimal care. mpnforum.com/tsr-the-list/
I think your Dr is strongly seeking a fast HCT reduction without phlbs. For some patients, IFN like Besremi can take a while to reduce HCT, it's frequently seen here. So if your Dr is seeking fast HCT reductions without phlebs, taking HU temporarily may help get there. At 55 that is a good reason for Dr to want prompt results. HU can be faster acting than IFN. Note that for Pts on HU transitioning to IFN there is an overlap period with both meds, so it is known to have HU with IFN for some time. Once HCT is in range you could stop the HU if Dr agrees.
But as Hunter says, IFN has advantages long term. Likewise if IFN doesn't work out. Jakafi is also very good medicine for many PV pts.
I've been on all 3 of these meds, but never had phleb. All three have things to be afraid of, but it's different for each in balancing the risk/benefit..
Not sure if this helps,but my husband was diagnosed with PV + Jak2 Sept 2023 & put on Hydroxyurea. After tweaking it a few times he now takes 500mg pday (before going to bed) & has had NO side effects @ all ,Hematocrit staying under 45. He feels the same as he did 20yrs ago. Obviously keep my fingers 🤞 that he carries on tolerating this. Hope you soon find what suits you
the main priority is to get your Hct down to 45 or some say 42, so you need a drug and or venisection that will do that quickly in the short term and then you could chose your drug of choice. Besremi can be excellent for some and occasionally works quite quickly but tends to be slower initially. Hydroxy usually works fast and Rux can be fast , certainly in most cases faster than Besremi. Some get a result on Besremi in weeks, most in months but can take a year or two to become venisection free. Hydroxy usually works in a few weeks if dosed properly.
As you may know Bes or Rux may for a subset have an impact on allele burden and some speculate on progression and overall survival for a subset.
However, you don’t say why your doc won’t venisect you, if you are able to be venisected the absolute priority should be to immediately start venisecting until Hct is under 45/42 whichever drug you start. I of course don’t wish to worry you but thrombotic risk is much higher at 55 than 45/42, that should be your docs focus.
Agree with everything here. My allele burden has fallen from 14.5 to 8.5 on Besremi. There's enough data that I do feel very good about what that implies about reduced chances of progression to myelofibrosis. The data I've seen seems pretty clear on that front, even though it's new.
HCT control is the last thing to be controlled using Besremi. I've been on it for close to 2 years now and still no HCT control whatsoever, though all other numbers are much better. Phlebotomies have continued. I'm on the max dose of Besremi.
I also just started Jakafi a couple of months ago, but my understanding is that Jakafi tends to have a much faster impact on HCT control and may also have some benefits towards disease modification.
However, with your HCT at 55, that's quite high and should put you at meaningful additional risk for a stroke. Getting your HCT down is important. My doctors were pretty alarmed at that level. In conditions like polycythemia vera, where HCT levels can exceed 55%, stroke risk can be 4-10 times higher if not managed properly.
Hydroxyurea does also help with HCT control, but is not considered effective at disease moderation. It has more of an impact on the symptoms. You are still young, I would be considering disease modification medications. I do think Besremi tends to act too slowly for how high your HCT is. I'd consider HU or Jakafi so that you can get it down in the short term, but I would also want to start Besremi.
Have you had an allele burden measurement as well? What are your platelets?
For what it's worth on the max dose of Besremi and a low dose on Jakafi I have zero side effects and I feel pretty good. But there is a wide range from person to person.
I cannot really do justice here to how important I think it is to try these medications. They are scary, it kept me away from them. But the prognosis without treatment isn't great. People do refrain from talking about this some, but it's definitely the conclusion I've come to.
hi there I am PV patient on Besremi. I decided when I was diagnosed to speak with my Hemo and we both agreed to start with Besremi though the side affects can be concerning after reading the side affects of the other medications I choose to jump right in. I’ve been doing excellent my jak2 burden started at 78% today after 2 years on 150mc every 4 weeks my burden is at 6%. I’ve had no side affects I feel good and starting this month my Hemo pushing me out to every 6 weeks. It’s in my opinion to give it a go. Best of luck.
Diagnosed with pv in March. I have been on hydroxyurea since July and my white blood count has always been too high - recently at 13. Other counts have been good. After taking just two injections of Besremi, my white blood count is down to 6. So my doctor, who has never worked with Besremi, told me I am doing great and to hold the dose at 100 mcg. I should be off hydroxyurea in a few weeks.
Mamabear, I'll direct you to my "bio" for my experience with Besremi healthunlocked.com/user/Ovi.... I generally was very responsive to this drug, tho I also suffered some side effects. Currently, I'm still on Besremi at its lowest possible dose, once a month, because my HCT has generally been in great zone for a long time. This last season, however, my platelets are inching up again. The doctor says I may have to raise the dose if platelets hit 600,000 again. (Mine have gone over 1 million a few times in the past.) Currently, I am puzzling over iron results: iron and ferritin are on the low end of normal zone, but unbound iron capacity and TIBC are the high end of normal. If someone can guide me to an explanation of that, I'd love it. It sometimes takes the clinic a while to contact me back.
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