I have PCV and have generally been doing well with Pegasys except that its legendary itching has been a problem, especially in the hot, humid summer, so I thought I'd take a little vacation from it with hydroxyurea until the winter comes.
My Hem/Onc wants me to be on 500mg but I'm trying to titrate up to that and I'm finding that even at 250 mg I have quite a bit of nausea. I can control it with a 5HT3 RA but I don't want to be on that all the time (BTW, ginger is a natural 5HT3 RA but it has a shorter half-life and a narrower therapeutic range than the prescription ones), so my question is, if I just tough it out will my body get used to the HU and the nausea go away?
My Hem/Onc says the nausea will go away after my body adjusts to the HU but I've seen several comments here from people where that either didn't happen or took a ridiculously long time (18 months in one example).
Thanks in advance.
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pnArt
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Hi. I’m afraid I probably can’t answer you but I’m not sure. I get nausea I& am on HU but my nausea comes after eating & almost always at dinner only. And I’m not sure if it began before or after I started on HU which was years ago. But do you mind telling me where you’ve read there’s a link between nausea & HU? I’m so sorry you have this as I know how awful it is. I successfully use GINGERALE soda. Have you tried that? Does it happen more after eating? Katie
Thank you. Do you mind taking the time to tell me it’s you’ve read if it’s related to eating in the evening? Glad someone has answered YOUR question! Thank you. Katie
I have not read anything about whether it's sensitive to what time of day you take it. The thing to remember about HU is that it's a very old drug - it was first synthesized in 1869 and has been used for sickle-cell conditions since the early 1900's, and as an antineoplastic agent for almost 50 years, so it got grandfathered-in and is not as well-characterised as many newer drugs, so there's not much out there in the medical literature, so we have to rely on each other for this information. I find that for me the nausea tracks the pharmacokinetic curve, i.e., it starts about an hour after I take it and lasts for 5 or 6 hours. I've tried morning and afternoon, but I haven't tried evening because I don't like to go to bed feeling nauseous.
My doc gave me prescription omeprazole or something like it (can't remember which one) and that helped immensely with feeling sick after eating. Excess stomach acid can cause that.
Thanks, LadyAnello, I tried PPI's (the class of drug that includes omeprazole) without any benefit. But that wasn't my question. I'm not looking for a treatment or preventive for the nausea; I'm trying to get my expectations set.
My question is whether the nausea goes away in the long run as your body gets used to HU. I have a science background and extensive experience reading medical and scientific research literature (on Pubmed and Europe PMC, etc), plus HU has been around for over a century, so there are lots of citations on it. Yet I still can't find any support in the research literature for my Hem/Onc's suggestion that the nausea gets less over time with steady dosing. So I thought I would ask here because people here have practical experience with HU. But for some reason people here are having a hard time understanding the question. So to reiterate:
IF you had nausea with HU (not everyone does) then did the nausea stop happening over the long run as you continued to take steady doses of it? If so, how long did that take?
No, I haven't started HU - will probably do so next month. I've been on aspirin and phlebotomy for 15 years. Nausea seem to become a part of my life about 4 years ago, and mostly after eating. I'll ask my hematologist his advice on HU and nausea when we meet and if he tells me something useful, I'll get back to you.
Thanks Sallie, but that's not really my question. I'm not looking for ways of controlling the nausea - I want to know whether this is just a temporary side effect while my body gets used to this drug, like my Hem/Onc says so it will go away after awhile, or whether I'm going to have to deal with it as long as I'm on the the HU.
I’ve been on 500mg of Hydrea since February and still have nausea BUT I’m off for 3 weeks to see if it goes away and it has not. Actually getting worse. Getting tested for other issues.. all normal so far so maybe it’s just the cancer we’re dealing with? I started having trouble with swallowing a couple of years ago which made me throw up as well but since it has all gotten worse since diagnosis I wonder about the cancer. I hate that feeling and it keeps me from enjoying food. Have a small appetite as it is. Now I have none! Good luck. Keep in touch. 🌹
" I started having trouble with swallowing a couple of years ago which made me throw up as well but since it has all gotten worse since diagnosis I wonder about the cancer"
What kind of an MPN do you have and what was causing the swallowing problems? The reason why I'm asking is that in addition to the nausea, since I started on the HU I've had an outbreak of esophagitis. Many of us with PV take aspirin which thins out the mucosal lining of the stomach and esophagus which leaves us vulnerable to conditions like that, and this can be compounded by drugs like HU which directly attack mucus membranes. I've had to stop taking HU until my esophagus heals. Taking tonnes of sucralfate and famotidine now!
I have ET. Diagnosed in February. Started having swallowing problems about 3 years ago but if I ate slowly and small bites all ok but now it doesn’t matter. So I’m having a fluoroscopy esophagram done to see what’s going on. Interesting info on the aspirin. I’ve always taken aspirin for all pains all my life.
If you were prescribed HU for your MPN, did it cause nausea, and did the nausea go away after you were on the HU for awhile (and if so how long did that take)? Thanks in advance.
I have been on Hydroxy for three months (500 mgs daily). At first the nausea was quite bad so I started taking it just before I went to bed. That actually helped for awhile because I fell asleep before it started and it didn’t wake me up. However, lately if I don’t fall asleep immediately after taking it (and who can do that?) the nausea comes and then makes it impossible to fall asleep. I have tried many remedies like ginger, Gravol, but nothing helps. I don’t know how that helps your question other than to say the nausea doesn’t seem to be static - it comes back after seeming to settle.
Thank you for your response! That's exactly the information I want and even though my question received a lot of responses only one or two of them provided clear answers like yours did.
My doctor believes that the nausea associated with 500 mg/day HU is transient (i.e. it go away in a short time as your body gets used to it, and mild ("more like a little queasiness than actual nausea", in her words).
So far I have not been seeing much support for her beliefs on this matter among fellow PCV or ET patients who take HU.
I have a science research background and I have not been able to find much solid information on this question in published scientific and medical literature, even though this drug was first discovered in the 1860s and is been in wide use for a variety of diseases since the early 1900's!
Of course each of us is different - I can't tell you much as I just started on HU 8 days ago (500mg 2x/day) but I experienced one day (so far) of nausea - first day was fairly bad and then it went away - will see if it returns as the HU build sup in my system but so far so good.
I’ve been on Hydroxy 3 years for ET. I do have nausea fairly regularly and take Zofran which works well. Headache and fatigue everyday, not good. I hope you get better.🙏
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