It’s a strange question but does anyone taking HU have rest breaks from the med?
Quick background to my random question - I was diagnosed with ET/MLR in 2015, platelets 550 but didn’t start HU treatment until 2024 when platelets had reached 860. So it took 9 years for PLT to rise by 300.
I’m prescribed 500mg of HU, 6 days a week and up to date my PLT have only dropped to 650 from 860 in 6 months. My haematologist wants them at 450 so it may take some time yet, if he doesn’t increase the dose (which I don’t want as I’m feeling very tired on it).
My rationale is, if my PLT activity is slow n steady, once they’re at the desired level, could I have a break where I don’t take the dreaded stuff, until PLT have reached a certain level again?
I’ m probably clutching at straws… I hate taking this stuff! I was asymptomatic before and felt well.. now I feel awful.
I’m hoping that ‘take a break’ is possible and would be grateful for any insight..
Thank you all. Stay well 🙏
Jayne
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JaynieQ
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This is something you need to discuss with your haematologist as they will be aiming to manage your stroke and thrombosis risk as part of your overall care.
I have taken a break of up to 4 days from HU (maybe 3 times in 12 years) when I’ve been laid low by a virus and only then having spoken to someone in the Mpn team.
For many patients fatigue is the main Mpn symptom so it’s possible it’s now contributing to how you are feeling.
You are on a low HU dose but if not tolerating it then perhaps it’s time to have a discussion about alternative meds.
of course it has to be agreed with your Haem OR another Haem, one thing to consider is instead of having a break from the meds when you reach target is to reduce the dose, eg Monday Wednesday Friday or take a lower dose, there used to be a 200g dose , not sure if still available. Or maybe try a different med or Haem.
Chemotherapy holidays are possible in some situations, particularly when there are issues with tolerating the medication. Each person needs an individualized risk assessment based on the specifics of their MPN profile.
There are several other options when reaching the target platelet level is resulting in an unacceptable level of toxicity from the medication. HU is not the only option for cytoreduction. There are other options you may respond better to. Pegasys is the other first-line treatment option for ET. Some respond better to PEG than HU. That was the case for me. Anagrelide and in some cases Jakafi are second-line options. There are also drugs in clinical trials.
Another option is to set a different treatment goal. Some MPN experts use 600 as the target for people with ET. Others do not use a specific number, using the delta (degree of change) instead. Some do not use a number at all unless the PLT numbers get so high that hemorrhage becomes a greater concern. Setting a case-specific goal for your case is something that should be done in consultation with a MPN Specialist who can best determine the most appropriate goal for your case. Note that there is not a linear increase in risk when PLT are at 450 vs 600. It is reasonable to ask for the rationale based on research/evidence to set the goal to normalize PLT count below 450 for your specific case.
Many thanks as ever to you Hunter, for your sage advice. I’ve just googled Delta/degree of change but even AI baffled me! I’ll throw the words into my next meeting with my Haem and see what happens.. 😁
Some MPN experts consider the delta, degree of change in the level of thrombocytosis, to be more significant than an absolute number. That makes a degree of intuitive sense. Someone with PLT in the 700s may not need the same level of cytoreduction as someone with PLT in the 1400s. Since we know that there is not a linear increase in risk of thrombosis due to PLT levels, individual history of thrombosis would be a more significant factor. Likewise co-occurring medical conditions and history of hemorrhage. This not to say that the PLT number does not matter at all. It can matter but the PLT target should be set on a case by case basis. That is why consultation with a MPN expert is so important. We need MPN expert guidance to set individualized goals. One size does not fit all in MPN treatment goals for PLTs.
I have taken a few breaks from HU since being diagnosed with ET JAK2 + 7 years ago. I had a month’s break when platelets were stable around 300-350, then a couple of years after for the same time, both agreed by my Haematologist, then last year for 3 weeks whilst I was suffering from bad Covid as she advised this because of it causing immune deficiency. Each time my platelets rose gradually when I had to start the HU again. It definitely keeps the platelets and other blood cells normal. I was on 500 mg for 7 days until the end of last year when the Haemo reduced it to 5 days and none Sat and Sun. Recently though I’ve been feeling very fatigued so am going to discuss this when I have phone appointment on 14 th April. Hope you feel better soon with an answer.
HU didn't work for me due to side effects. Cannot comment on taking a break from it but can comment that I have taken a few breaks from peginterferon that is my treatment for ET. In my experience with no issues with clots nor bleeding ever, as long as my platelets don't go above 800 my hematologist is OK. That gives me some latitude as my goal is to stay in 600's. Last year we took two cross country hotrod tours and a vacation to England for which I did not take my weekly peg treatment for two weeks each. I kept up with supplements (pills and capsules) and drinking water as much as reasonably possible. Also made an extra effort to exercise legs. As soon as we returned I got blood tests. In all cases, platelets only slightly raised and no other questionable results so OK to resume peg treatment. Key is being fairly stable to begin with and discussing ramifications with treatment team to make informed decision. I had two fears if my ET went sideways--being in the middle of nowhere in the mountains and plains of western US, and being in a foreign country with little knowledge of what is available and where to go for help. I prepped as much as possible in advance to get referrals, phone numbers and addresses, and carried hardcopy maps to guide us in case cell service was a problem which it was in the mountains of US but not anywhere in England. Please do follow up with your treatment team to address concerns and have an emergency plan. Stay safe!
Not a strange question. Especially as you feel worse taking it .I had a months break last year to do a detox . Platelets went up by 200 .
Spoke to Guys about taking ToxiPrevent . They said as long as 2 hour gap between meds and taking it is fine so this time not stopping. I have 500 dose every other day
I take medicinal mushrooms and CBC oil which may help with effects of chemo.
hi, I’m afraid not. Those pesky platelets have a mind of their own. You will have your meds lowered. Don’t count on it though. They might not respond unless you increase your dose.
ET here. I’ve been to doctors who have suggested medication holidays now and then for detox too. Same doctor was famous for suggesting people with ET needed nothing more than aspirin as long as you felt ok and weren’t having trouble with clotting. Made sense at the time as I felt fine when I was diagnosed even though my platelets were 1.8m.
Everyone is different, my wife's platelets could change by the day when on hydroxycarbamide. It could take a half a week to reach a count of a million if she stopped taking it. When in hospital last year, she was admitted due to platelets being 4, yes, 4. And hydroxycarbamide was stopped, within a few days they were at over 1 million.
ET/JAK2 here. on HU since 2019. 100 cc 4 days a week. 500 others. also have thrombosis issues so take statin and clopidogrel. like you hate them and the tiredness. I have only taken HU as I can tolerate them but have 'noticed some painful joint issues lately and wonder if these are related to the HU. I will discuss with hemo. Don't just stop taking meds. please discuss with your team. let us know how you get on.
Huge thanks everyone… it makes such a difference to be able to sound off to people who ‘get it’..
I was just wondering (and hoping..) that if my platelets take years to rise 300 points then maybe I could take the HU for 6 months and then have a break of several months or until the PLT rise to 800 ish.. But I realise it’s probably just wishful thinking/daydreaming..
I will if course speak to my haem and see what he advised. I just feel so awful on HU and the thought of feeling like this indefinitely is taking its toll on my head!
Sorry to moan, there are so many who have far worse than me to contend with. But I just can’t get my head around the fact that this is it, for life, 😔
Thank you all for your wise words, they mean so much.
Just as a general comment, this forum never ceases to amaze me. I'm 78 and dealing with PV for 5 years and fortunate to have a great doctor but at the end of the day, this forum fills a need that I just don't know how anything else could. Thanks to all of you - both those with questions and those with answers. Many many thanks and best wishes to all for continued good health and progress on our journey.
I feel you on this matter. I hate this stuff and have not told them I'm not taking it. I don't know if it's because they 99 percent of the time do a finger prick blood test versus a blood drawn that my platelet count fluctuations are so far apart from one count to the other. Example-two weeks ago 857,000 next week 536,000. Who knows if this is working or not. I feel beter not taking it but got what I believe was a rebound weight gain of 25 pounds which I don't like a bit .Maybe it will drop soon. I guess my advice would be alk it over with the Doctors and maybe do a month or so without it and look at the numbers. Blessings from LA( LOWER ALABAMA)
I think your question makes a lot of sense. I am also on Hydrea, and at my appointment just last week, the doc gave me the OK find a med schedule that works for me, as long as my platelets are 600 or lower. I was diagnosed with ET over 20 years ago, have tried other meds, and Hydrea is what works the best. But taking it every day is problematic for me, so I adjust the days I take it depending on my activities for the week. I have not stopped it completely, but am currently only taking it 3 days a week.
speak to an MPN & get expert advice I could not tolerate HU so MPN put me on Interferon . I hover around 300 to 400 . My platelets were only 500 when ET diagnosed but as over 65 despite being fit they worry about blood clots for us . I am happy on Interferon no side effects . 👍
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Interferon side effects?
Headaches on HU
Muscle pain since starting HU 
HU to Peg Transition Problems - 
Spontaneous remission of some blood counts after Dx
