This is my first post. Hello!
I was diagnosed at age 38 almost 5 years ago with PV. Since then, I have maintained with aspirin and phlebotomy ( only about once a year). Just had my hem appointment and my platelets and white count have been creeping up over time and my dr is talking about HU. How long can you take HU? How long have you been taking it?? It terrifies me, I am so young and plan to live MANY more years...!
Some people have been taking it for 20+ years with no problems. Look into pegylated interferon (pegasys) if it is funded in your country. That may be a better if you're given the option.
Do you live in the UK? If so, I’d push for Pegasys as a treatment option.
At your young age, most MPN Specialists would consider Pegasys as the way forward for you. Also, if you only see a regular haematologist it would be worth consulting with an MPN Specialist.
Hello,
I started taking HU around same age, went on it pretty much straight after my ET diagnosis. I was on it for around 8 years and it kept my platelets under control. It was only when I kept asking if I could stop my Dr eventually agreed, platelets then shot up to 1400 and have been roughly the same since I stopped around a year ago. Currently taking nothing and on 3 month appts. Hope this helps.x
Hi, I took Hydrea for about 4 months and it had a very bad effect on me. The haem. stopped it and I had 2 phlebotomies which lowered my haematocrit to 42 and stays there up to now. But my platelets from 750 when I started it are now 990! gradually going up since I stopped it. Why didn't he prescribe a phlebotomy at first instead of giving me Hydro so casually? Why do they give these drugs without thinking other ways first? When I first went to him he said my counts were sleeping for 15 years. So why did he wake them up? No answers I am afraid. I am on aspirin and will see him soon as I want to have these gene? tests that predict progression. Also my white count have gone up beyond normal for the first time.
It is definitely something to talk to your haemo about, but there are a great many people - lots on this forum - who have been taking HU for decades, and are fine. Maz, the administrator of this forum, is one who has ET and has taken HU for quite a long time with no ill effects. I’ve taken it a year and a half, and have ET, and the meds have done what they’re supposed to do - brought my platelets down. The early days of diagnosis and treatment are really freaky, there is no doubt about it. I’d urge you not to go to Google for info as the information is usually hard to link directly to our own situation and is often out of date and is worrisome for no reason. Hopefully lots of people will weigh in here. I found this forum very helpful in my early days of diagnosis. The vast majority of us, like you, are also going to be around for s long time.
We asked about pegysus and was told side effects are hurrendous we don't recommend it . I said well not every patient suffers side effects .
My husband is on HU and ruxolitanib. He's had no side effects off either one .
Think it's all down to cost. 🤔
Hi. This is off the subject but for some reason I have this fond, maternal feeling toward you because I remember vividly the early posts by you when you first joined us and am so impressed with the progress you’ve made. It’s only been around a year and now you’re a seasoned “pro.” It’s just great to see you helping so many others. Hope what I’ve said didn’t offend you. Be well! Katie
No offence at all! That is so nice of you to say - and to remember. I guess, as we all do, I still have days when I worry and wonder but generally - as you said it would - things have been fine. I’m aiming to be one of those “decades with this thing” people!
Hi Please see my posting below that is meant as a reply to you but ended up in the wrong spot. Katie
Hi I was diagnosed with ET at 38 but it was managed with aspirin only for the first 10 years. However, 14 years ago I began taking HU. My platelet count has been kept to around the 400 mark throughout that time on just 500 mg per day (1000 mg on Sunday). I have suffered minimal side effects, so consider myself fortunate. I live a very normal relatively active life. But I did have those first 10 years fairly medication free. So might be worth seeking another opinion. Good luck.
Hold on, don't rush it. I am 57 and was diagnosed with PV at 51, on Aspirin and a phlebotomy every few months. My consultant will want to but me on Hydroxy or similar at age 60 but may not if I carry on as I am. I have been taking Curcumin (active part of turmeric) at 1 gramme a day for 5 years and although my haemotologist was sceptical, she is amazed at my results. Platelets 488 at last two appointments. I saw a different haemotologist at one of those appointments who nearly fell off her chair. It is not great to take it once you are on the conventional drugs as far as I know so I am telling you now. What is amazing is that there is actually loads of evidence out there about this. I have many papers I have collected but this one is the most relevant especially if you are Jak 2 positive. I feel a duty to reply to you!
I m on HU for 11 years .I m 59 , i m more I more deaf, much coxatrosis pain , polakiurie etc. but I don't know if is HU , age or both . I think both . Keep close . Regards,Catalin
Hello, I was diagnosed with ET jak2 nineteen years ago aged 37. I have been taking Hydroxycarbamide for this length of time, I struggle with fatigue and have had 2 skin cancers over the years. Can't say I like taking it but compared with a Thrombotic event ?? I do feel it's effects though. Hope this helps.
I can't tell you what to do this is for you to decide. I I were in your place after so many years and those effects I would ask to stop for a while take your aspirin and see how you feel. Give yourself a brake!
Hi DN 515 - sounds like something out of Star Trek!
Hellloooooo!
I have a daughter of 36, so can understand how you feel. You WILL live many, many more years.
I’m 65 and was diagnosed with PV 10 years ago and given HU straight away, taking 500mgs twice a week, working up to at the moment 1000mgs a day.
It suits me and many many others just fine. I have met patients who have been taking this VERY MILD chemo drug for 30 years, taking 2,500 mgs a day with no ill effects.
This is a drug which you have to view as keeping you alive, much like diabetes meds.
Don’t be frightened by things like “ do not touch this drug with your hands “etc etc. I’ve been popping them for long enough by hand. I even chewed one once inadvertently, rinsed out my mouth well and voila! I still have my tongue in place.
Pegasys can possibly cause more side effects than HU, so please don’t be worried about HU. You’ll be fine, and by the time you’re 45 some clever person somewhere will be well on the way to finding a cure.
take all posts on this website with a bit of a pinch of salt if they’re a bit moany.
As I’ve said before, for every person who doesn’t feel tickety boo, there are hundreds out there who do. Like me!
Chin up, all will be well.
Try attending an Mpn forum , they’re informative, full of jolly friendly people.
The best one is the Patient Day in London in November. Highly recommended!
Love
Louise
Windermere Cumbria
I’m determined to get there this year Louise. I hope we can catch up if you’re going?
Judy xx
I was diagnosed with ET over 30 years ago. Progressed to PV about 6 years ago. Still alive and kicking! Most of the time I have been aspirin-only. I have had three one year forays into hydroxyurea chemotherapy when I had spikes. The first two times, no big deal. This last time - I have become HU-intolerant. Toxic effects even at low doses. No more HU for me. The MPN specialist took me off it, saying benefits were not worth the risks in my case. That is my situation. May or may not be the same for you. We each present with a MPN profile that can be unique and we each respond differently to various meds.
it would be a bit unusual to use HU at your age. Many docs will not opt for cytoreduction unless you are symptomatic in some way other than lab numbers. Most docs opt for peg-interferon or Jakafi for people in your age group if they need chemo. Bear in mind that ALL of the chemotherapies come with risks. It is really important to get educated about what all of these meds do - how they work - what the benefits and risks are.
Hydroxyurea is a cytostatic medication. It works by interfering with DNA activity - slowing down the activity of hemopoietic stem cells, thus reducing the production of all types of blood cells. That is its benefit. Some of the risks come from the fact that HU can break allele strands and interferes with the DNA self-repair function in all of your body's cells. Thus it is teratogenic, mutagenic, and carcinogenic. While many people tolerate it without serious trouble, some level of side effects are to be expected. Per the NIH - HU is a "highly toxic drug with a low therapeutic index", thus some level of toxicity is likely in order for the dose to be sufficient to reach the desired benefit. There is more to understand if you must seriously consider the use of HU. Please be careful to base the decision on information from reliable sources and not just scary Dr. Google tidbits.
The bigger question is whether at your age chemotherapy is indicated at all. The MPN Specialist I see calls chasing lab numbers "a fools errand." He is focused on evaluating each patient based on their individual presentation of the MPN and whether they have symptoms that are a concern. The move to individualized treatment is finding support in the MPN treatment community and is a hopeful step forward for all of us.
FYI - in my case - it turns out that my increased platelet levels actually put me more at risk for hemorrhage than thrombosis. So - I no longer take aspirin either. My regimen is phlebotomy-only. So far - so good on this plan. It is real relief to not bleed and bruise so excessively as I Have for years when on aspirin. That is not the correct tx plan for everyone with a MPN, but it is for some of us. Hope you get the right plan for yourself figured out ASAP.
Hi. How many are your platelets and how did you bleed? Nose? And how did you find out that you are more prone to haemorage?
My platelet levels normally cycle between 500K - 725K. Following surgery or illness, platelet levels can spike as high as 990K. It seems that my von Willebrand Factors tend to drop below normal when my platelet levels get upwards of 700K. When on aspirin, at least one of my prothrombin times was typically just a bit outside the therapeutic range on the too long side. For many years (while on aspirin) I experienced unexplained bruising, excessive bruising, and excessive bleeding with even small nicks. Once had a lipoma removed and it took nearly a week for the bleeding to stop. Recently had a routine dental cleaning and it took over four hours for the bleeding to stop. The hygienist noted there was no reason for me to be bleeding so much (she was worried). None of the bleeding/bruising issues have been so bad as to require medical attention, but noticeable and very annoying.
The regular hematologist I see did not see this as an issue. It was the MPN Specialist I consulted who recommended coming off the aspirin. He was clear that my risk for hemorrhage was greater than my risk for thrombosis. He rather prophetically stated "your really do not want to get a brain bleed." A couple of weeks after seeing him, I was diagnosed with a hemorrhagic brain tumor. I had been bleeding in my brain. Aspirin definitely not such a good thing for me.
FYI - I did get a more extensive set of testing for Acquired von Willebrand Disease. The regular hematologist did not know the testing protocol, so I had to look it up and give it to him. At the point I was tested, I did not appear to have the full-blown AcqvWBD. I suspect that I hover around the edges of this bleeding disorder, perhaps at times being symptomatic and at other times not.
Hope that helps.
I don’t know the answer. I’m sure tolerance varies widely. I’m 41 and started taking it this year (lab records indicate I have had this since at least 2006 but I only got my diagnosis this year after three years of suspicion). I’m hoping I will be on it for a good long time and also banking on alternative treatments being available down the road. For me, HU has improved my quality of life. I have four kids, some with high needs and HU is helping me to be there for them. We don’t have a crystal ball so we just have to make the wisest choice we can and hope for the best.
Hi. Have you had any health problems related to your MPN like blood clots or excessive bleeding? From what I’ve read here, and elsewhere, they put folks on it if they’re high risk. That usually just if you’ve had problems like blood clots or hemorrhaging or over 60. Have you talked with an MPN specialist? That’s the best way to get good medical advice. Personally I’m glad I’m on it because I am high risk because I have had very serious problems & am over 60. But I encourage you to see a specialist before deciding. Good luck with this. I’m sure it must be stressful. And don’t hesitate to post more often if you have questions or need to complain or want support. Katie
Hi Katie! Thank you for your reply. I have had no clots, no symptoms and no complications ( thank goodness!) . I am low risk. I am also only 42. I was diagnosed after a routine CBC found my numbers were off the charts! I could have had a stroke or heart attack, but thank goodness I was good about my routine physicals... I am on the wait list to see Dr. Reuben Mesa in TX and they say I will get an appointment in January, so we decided not to take any action until I see him. My platelets are at 720 and my whites 15, but my reds are doing good.... it's just so hard that nobody really seems to know much about what to do with me... boo!
Hi Dr Mesa is excellent & will know exactly how to treat you. Hang in there & keep us posted. Katie
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