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.
Thank you, this certainly does make sense. There seems to bea focus on blood results and the medication to bring them under control, sometimes to the detriment of the patient’s wellbeing. Unfortunately, in the UK, many of our GPs and consultants are under such pressure that a holistic approach is impossible.
You are spot on Hunter, when you say we must be our own advocates. Thank you for helping me to put into words what I was feeling. 🙏
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.
Saltmarsh, I totally agree. It’s so easy to feel alone and isolated when you have a rare and unfathomable condition. I’m glad you find this forum so supportive. I do too!
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.
Profdefrancais, thank you so much for your input. Your response has given me lots to think about and hopeful that I may be able to follow a similar route. 🙏
I have the JAK2 mutation, but they did not even know what that was when I was first diagnosed. I have tried interferon and could not work full time with the side effects. My platelets currently run between 400 and 600, and my doc says that as long as I get regular blood tests, and they do not go above 600, it is fine for me to take my meds on a schedule that works for my lifestyle.
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 . 👍
I completely understand your reasoning . I was on clopidogrel which reduced my symptoms without side effects . My platelets had also risen slowly over years but I did have lots of random symptoms which as yet were not attributed to my MPN .
I was then told I must start Hydroxycarbamide platelets 618 but difficulty getting prescription meant I didn’t start immediately. I then got covid and they shot up to 750 my highest ever . The rise was not attributed to covid . Though I thought it likely . My dose when started was increased to 1000 every other day even though the response was very good and made me feel absolutely awful .
I have since negotiated back to 500 5 days only . I would like to reduce more . Platelets maintained at around 400 . This is obviously my view and my reasoning
Hi I had to go in to see the Haemitologist because getting my. Platelets within the 'normal' range was effecting my other blood counts. I now have them between 500- 600 it's how you feel, don't let HU take over, my ET was found by a routine blood test Platelets 980. Everything been good since 2018.
Please be aware that I am not advocating that you do what I have done, but I will tell you my story.
I am seventy seven now.
I was diagnosed in 2015 with ET Jak 2 positive.. My platelets were in the 800s. My consultant put me on Hydroxy 500mg every day and I was also taking Simvastatin for high cholesterol, 75mg aspirin and lisinopril for high blood pressure.
I spent seven years on this cocktail of drugs and got systematically worse by the year. In 2022 I felt so ill that I decided quality of life was more important to me and stopped taking the lot.
At the time I ceased the medication my platelets were 375, so the Hydroxy was working. I have had six monthly blood tests since then and my platelets have not risen above 480. I did start getting reflux and I was prescribed Lanzoprezole and Clopidogrel to thin my blood and guard against clots which I’m sure you know are common with ET.
I feel a different person now that I do not take Hydroxy, Simvastatin, Lisinopril and Aspirin which was also causing bruising problems.
Perhaps I have gone into remission or something, I am not sure, but I won’t go back to taking Hydroxy.
There are alternatives for you and if you are feeling anything like I was you could have a very serious talk with your consultant. I have to say that mine was not at all happy when I ceased my medication, it was my decision and I was not prepared to continue any longer.
I know there are at least two other medications you could take that may suit you better.
Marcia, thank you so very much for sharing your story with me. I would very much like to do as you have. I’ve been taking the HU for 6 months, all the while hoping that I would adjust and start to feel ok but the opposite seems to be true. I feel like a different, much older person than I was before I started the treatment.
It’s wonderful that you’ve had the courage to do this and that your determination seems to be paying off. I fervently hope you have gone into remission!
Thank you again Marcia. Your story has given me hope 😊
Thanks for your message. I must repeat that I was not advocating that you do what I have done. It maybe that I was just lucky and I would hate to be responsible for you perhaps not having the same outcome as me.
Please have the conversation with your haematologist and see if there are other medications which may make you feel less tired, pegasys for example.
I took my decision because I was at the end of my rope and considered very carefully having perhaps some good years with my grandchildren rather than more years of what I considered a half life.
Thank you again Marcia, and yes, I understand that you weren’t advocating that I do the same. You were just sharing your story. I do plan to speak with my haem at my appointment on 29/4 and discuss options with him. It took him years to persuade me to start the HU, so I don’t ghink he’ll be best pleased if I decide to stop it..
But I have certainly thought of going down the same route. If I had been suffering symptoms before taking HU, then it would probably not feel as counter-intuitive. I had no symptoms at all. Now I have many, the most debilitating is the fatigue, closely followed by the brain fog.
You must have felt a huge sense of relief and freedom when you made your decision. I really do applaud your assertive bravery and wish you many years of good health.
I ran out two weeks over Christmas and my numbers jumped back up right away and I started having soreness in my abdomen (spleen / liver ) again. I take 500 Hydroxyurea daily my count was in the low to mid 400 and after 2 weeks I was already up to almost 700
Thanks for your thoughts Raineless.. Sorry to hear your platelets rose so quickly after a break from HU. As mine have always been very slow-moving, I’m really hoping that will be the case if I have a break from it.
Hi Jayne, I noticed you said you were asymptomatic and in the UK. It may be your haematologist is not an MpN specialist. When I was first diagnosed my haematologist said zi would go on hydroxy once I was 40 or my platelets hit 1000. So I switched to Manchester, where they take a holistic view, My cholesterol is fine, I am not diabetic or pre-diabetic, and my only symptom is migraines which I take aspirin for, and they are happy for me to stay off treatment for now. I focus on keeping hydrated and overall heart health. My platelets are now 1200. Maybe you have some other risk factors, but if it is platelets alone, and treatment makes you feel worse, I would suggest you get a second opinion, maybe from guys or Manchester.
Thanks Rebeccaxxx for your thoughtful reply. I’m very lucky with my haem who is an MPN specialist. But as I’m now the wrong side of 65, even though I have no other medical conditions, we both felt it was time to start medication. I was diagnosed in 2015 so I’ve had a really good run - symptom and meds free for nearly 10 years.. The problem is, you want it to continue! If my PLTs come down a bit more, I’m going to ask to reduce the meds and perhaps have some ‘holidays’ from the stuff. Hate the thought of taking it for life..
Manchester for a 2nd opinion is a good idea. I’ve seen Prof Harrison in London and she was happy to defer treatment until I reached 65 or PLT exceeded 1M.
Oh thanks Jaynie, I thought that may be the case. I am glad you have a good haematologist it makes all the difference. I am dreading having to take them, but also it will be a win for me to get to 65 without having to take them! I was diagnosed in 2018 and have had high platelets for some time before then, probably since 2010. Do let us know how you get on and if you manage to take a break from the meds!
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