Side Effects Hydroxea

Hello everyone, hope you had very interesting day at the London forum. Maz will you will be posting a video on it? My question to all is, been taking HU for two weeks now, 500mg had indigestion in the beginning but that seemed to pass, yesterday was the worse day! Around 2PM felt breathless and lasted for a little while, just felt icky and tired but walked through it. Last night wham fatigue hit me hard, very hard it was like all of sudden, then kept falling asleep and waking up every two hours and dreaming a whole lot!!!!!. Anybody have this problem or these problems. Worried about my iron as before I started HU was on the low side to begin with 28. I feel more symptoms now (related to ET) after taking the HU then before taking it. I sure hope my platelets have not gone up??? instead of down???. Here are other symptoms I am noticing, constipated, feet feel very warm and have gain three pounds and not eating a single thing different. Also Bloating. Thanks appreciate any replies.

Thanks again

4 Replies

  • I had indigestion a long time ago and eventually I found out from the internet that PV caused a rise in histamine which causes gastric acidity. When I told my haematologist she told me that it was a known problem. So I told her to make sure our GP's new about it! I have since been on Omprazole, just 1 per day and it solved my indigestion. I still get constipated but exercise helps to ease that.

    I hope this helps.

    Best wishes from Michael

  • I've been on HU for ET for over 2 years. I still get acidity but take Lansparozole for that. I had quite a few side effects at first, but most have faded. I sometimes feel very hot and a bit trembly but it soon passes, I also sometimes get itchy hands and feet, but all these are occasional things. Just keep a note of how you feel and when it happens. I get very tired, and often fall asleep when I sit down to watch tv in the evening. I'm retired so fatigue doesn't affect work!! My platelets were over 1100 at first but now are usually around 380. I also gained a lot of weight but am now gradually losing it via slimming world (I was overweight to start with)

    You'll find lots of info on this forum, and answers for your questions.

    Best wishes


  • Hi Mickey, sorry but we were unable to film the patient day so won't be able to share the day with people, we are sorry. The day was extremely interesting thank you, and very well attended. I hope you get your indigestion sorted out soon. Best wishes, Maz

  • I've been on 500mg of Hydroxy for just over 2 months. I feel very tired in the evening but that was also the case before diagnosis with PV. Constipation is an issue. I try to drink a lot of water and get 7 hours sleep. I've had other side effects but these two are the most bothersome.

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