Just a heads up for anyone starting hydroxy to look out for the anger. Don't know if this was just me but I had horrible anger for the first two weeks when I started taking the hydroxy. It culminated with me standing in my yard late at night and yelling at my neighbors over nothing ( thank goodness they have double paned windows and probably didn't hear me). Next morning I knew that something was wrong because I'm usually a very nice person and started noticing how very angry I was with everything (so sorry if you were driving and I flipped you off. Have windows tinted in car now so you can't see me flip you off)
I believe it was my body being angry with me because I was poisoning it every day. This may sound a little woo-woo, but I made peace with the hydroxy and now thank it before I take it and say a little prayer for it to do no harm and help me heal.
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h2ogal
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Please tell me the strength of the hydroxyurea you are taking. I, too, have some surprising - to me - and IMHO severe anger issues, flying off the handle with little provocation, though I seem to immediately calm again. Most of my anger is self-directed - I can't find something, or I hit my elbow on a corner - stupid actions that don't warrant the level of my anger, I don't thin. Could it be it's the meds? THANKS!!!
I know that it was the meds. I'm taking 1,000 mgs per day and I split it into 2 doses. Everyone is different sensitivity wise so even a smaller dose may make you "crazy".
Thanks!!! I am taking one 500 mg capsule 3x/week, but had been taking more at a previous time. I am a rather small woman, 125#, 5'3" and am easily impacted by meds- even aspirin works wonders and usually nearly instantly(!) for me. I was thinking my occasional slight lost of balance was the result of my attempts to adjust to having lost sight in one eye -HOPEFULLY TEMPORARILY(!) due to another issue, but it could be the Hydroxyurea. You have really helped me in my attempt to deal with what seems to be senseless angry reactions to some of the slightest "triggers". I can use this as a reason but not an excuse, so I can be more gentle with myself in dealing with it. Thank you again! And best of luck with your challenges!
Ask your specialist about vision problems as a result of your MPN. Loss and blurry vision appears to be a given from my experience and it has only got worse. ET Jak2 Cheers Anna
I personally think it’s a combination. You knocked yourself because you were tired. You were tired because of your MPN and meds causing fatigue. That results in frustration.
That’s my conclusion anyway. Ggrrrttr!!!
Hello and thankyou for raising this issue. I too have the anger issue and it is almost reflective. No notice and aggressive over nothing. Poor contractors and neighbours. It is a dreadful thing simply because people and family do not understand. Neither do I!
I'm thinking of having business type cards printed up that say, "Excuse me for my irrational behavior, I blame it on the drugs", and then passing them out.
Hi. Sometimes this kind of anger is from anxiety, depression, fear, etc. Many things can cause us to be angry about having to take drugs for our cancer. Having something called cancer is scary, so is chemotherapy. But I will say, this chemotherapy is saving a lot of us from having blood clots that cause strokes, heart attacks and other clot related problems. Many patients who post here weren’t fortunate enough to be diagnosed before those serious things happened and are now permanently impaired. Personally, I had 2 TIA’s before my diagnosis and one episode where both lungs filled with blood clots and I almost died. I was lucky, although I was in intensive care for 6 days, I lived. But every night for the rest of my life I have to sleep with oxygen because of the damage done to my lungs. And with respiratory infections that same damage results in my being severely ill and on oxygen 24 hours a day. I suspect as I age, I’ll become dependent on oxygen during the day even when i’m healthy because our lung strength weakens with age. So whether your anger is caused by the chemo or an emotional reaction to having to be on chemo, I say thank god I now have something that is keeping me alive. I don’t like it at all. But it is so much better than the alternative. I hope for you, that your anger lessens as time passes. If it doesn’t, talk to your doctor. You might want to consider counseling too because that can help get rid of anger if it’s an emotional reaction. Quite a few of us, myself included, take medication to help with our anxiety &/or depression. Good luck & be gentle with yourself. This is a tough road. Katie
I'm sending you some love and hugs. I had a mild stroke in 2012 and have suffered so many TIAs that I have lost count. I also had transient aphasia and vision problem which were apparently caused by the ET but I have not been left with anything like your problems. My anger and irritation is definitely as a result of the medication, however. Thinking of you and sending my love. Penelope
Mine took different forms, from losing the right side of my sight and losing my words and cognition, to feeling numbness down my right leg and a distant feeling. The sight was a weird one. The best description of that would have been when I picked up a book to read, the right side of each page was not there. at that time I was told my neurologist that it was due to overload and overtiredness and because I had already had a mild stroke and that the left side of the brain had been damaged/affected. It took about three weeks to get over these. Over-tired, lacking concentration and unable to make sentences properly due to not remembering words.
There is no offense intended and you are right in what you say. I lost a husband to AL Amyloidosis so have been through a month in hospital praying the Stem Cell Transplant would take, it didn't. I understand and I hope that your support network is solid. The anger referred to in the above posts is unlike the anger we commonly know. It is vastly different and when it occurs you stand there wondering where it came from. Quite disproportional to the situation that triggers the outburst. It is a symptom to a number of strong medications not just Hydrea.
You recognised your behaviour. I know when I’m trying to cope with life’s mishaps and additional unforeseen situations I get anxious, angry an frustrated with the family because I’m not able to whizz around like I used too.
Funny stuff this hydroxicarbamide! I morphed from a laid back devil may care bod to a short tempered witch, even though I started on a low dose of 500 every other day.
My poor husband wondered what the heck was going on, and even a couple of friends said I’d changed. ( not friends any longer I might add, I need the supportive understanding ones not the critical ones)
Am now much better although I do flip much more quickly than I used to, and I am far more outspoken, say what I think, and bolshy than I used to be - or is that age?
Am rather glad I’ve seen this post - I think you might be the first person to mention it.
It's hard isnt it being diagnosed with this disease, this cancer. That dreaded C - word. I was relieved to have a diagnosis after a long period of undiagnosed symptoms, but it was having to take a chem drug, hydroxea that tipped me into a really scary head space. Thankfully I was referred to macmillan counsellor, she was brilliant, and it was a turning point in my acceptance of what was happening to me. I would recommend this free service to anyone stuck with those overpowering feelings. We didn't just deal with the mpn but with some life issues. it was a turning point and I would use it again if I had to.
Yes I also have been having angry feelings since starting Hydroxy in November 2016, I feel angry with my local hospital over the way the diagnosis was communicated to me. I was not told really anything, just given an information leaflet on Hydroxycarbamide with MacMillan Cancer in big letters on top. Is this the right way to tell someone they have a condition that could be classified as cancer? I also am angry because I am not all that certain that actually need Hydroxycarbamide, I have been told I may get stroke or heart attack but how do I really know.
The first thing I knew of cancer in relation to myself was when I received an appointment card through the post for the Windmill, Macmillan Clinic. I phoned up to ask why I was visiting there and still no-one could tell me. Even when I saw the first haematologist she didn't tell me properly but told me She couldn't deal with me and needed to refer me to someone who could deal with MPNs. 7 weeks later I saw my doctor. In between I researched and everything I know about the condition is what I gained from that and future research. Everything! Oh, and this site, which has given me the strength to accept it and to move forward in a positive manner. Without it I would still be devastated.
Yes I also went on the Internet straightaway and this is how I discovered MPN Voice and got a lot of information from there. Thank goodness for Dr Google, I have more faith in Dr Google than the NHS. Not that I am blaming the NHS, lots of people working under pressure but it is clear to me that I have to look after myself, I should have been looking after myself from day one but it is often the case that people will only do something when their back is against the wall or they have some good reason to look after themselves like a career progression or some other external goal.
I actually found MPN Voice direct from the Bloodwise magazine that I found in the rack at the hospital on my first visit. after realising it was a cancer unit so google not my bag but direct academic and hospital associated sites really are.
Im getting closer to needing hydroxy. I didnt know it can cause anger problems. Now im having second thoughts. I already have anger problems. I dont think i could put my wife through more.
All drugs have a long list of potential side effects. I have taken Hydroxy for nearly 6 years with no side effects at all. I am grateful that it reduced my platelets and reduces the risk of a stroke/ thrombotic event. Don’t pre-empt what you MIGHT get. Take it if required with a positive attitude. If you really can’t tolerate it there are other options.
It also might clear up your anger problems. My anger went away after two weeks after my body adjusted to the drug. I think it was a problem with blood flow to my brain. Now that my platelets have dropped in half to the 600's I am OK, no unreasonable anger, and have had days when I can actually think. I am looking forward to having more days with more brain cells. I waited 2 years before I started the hydroxy because I was afraid of it, but my brain became so bad & unco-operative that I am gladly taking it now. Let's hear it for the brain cells coming back!
I agree with Piggie, all medication, even simple paracetamol, can cause many different side effects but they are not all suffered by every person taking the medication, so just because some people have noticed they have been angrier whilst taking Hydroxycarbamide doesn't mean that you will suffer the same side effect. Maz
I started taking hydrea afew months ago and only recently noticed myself getting irritable and angry.
My haemotologist told me today that this drug is generally well tolerated and the only noticeable side effects are nausea, headaches, diarrhoea and constipation. I do experience headaches from time to time and feel nauseas too. My iron is very low and my hematocrit has increased in the last month although is still in normal range. My platelet count however jumped alot which is causing my iron to go down.
As a result I have been told to increase my hydrea dose to 10 tablets over a week instead of 9 which I'm presently taking. I'm so sick and tired of this.
I'm off meat as it makes me feel queezy as soon as I smell it. I do eat plenty of good foods like my greens, fruit and veg, eggs, fish etc. But I feel completely lethargic every day and my haemotologist won't give me an iron infusion as it'll drive my polycythemia vera up.
I try to live a healthy and balanced life, I stay away from public places as much as possible so as not to get sick. But I still feel very tired and unwell with nausea most days.
Has anyone encountered similar issues? If so, how have you managed them?
Hi, Sorry to hear of your struggles, here are some things that have helped me. Ginger tea or capsules for the nausea. I take my hydroxy in the evening and make sure to sit up for an hour after taking. It seems to lessen the side effects and I can sleep through most of them. Drink water, lots of it. The fatigue is harder to deal with. I had to really work hard on changing my mindset from a negative one and missing the things I used to be able to do to being grateful for the things I still can do: standing up and walking, cooking for myself, being able to go to the loo on my own, driving. Naps are very good.
I hope that there is something here that can help. This website has been the most help of all to me.
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