Just started hydroxyurea..

[Ginger1017]

Only taken for 2 nights and feeling a little dizzy and slight nausea. For polycythemia Vera. Blood counts are all high and also had my first phlebotomy! Any comments?

[hunter5582]

Hard to say what is what with the dizziness since it can come from the PV, the phlebotomy, or from the hydroxyurea. timing may be the only clue. If the nausea is new, then it is a common HU adverse effect.

If you are new to hydroxyurea, then there is some good information about the medication and handling instructions.

drugs.com/monograph/hydroxy...

online.epocrates.com/drugs/...

oralchemoedsheets.com/sheet...

ethrombo.blogspot.com/2017/...

Wishing you success moving forward with your treatment plan.

[TLJ-1]

As usual, Hunter5582 points you to some useful information.

Hang in there! While the HU may cause some side effects, sometimes those side effects dissipate after a while. At least, that happened for me with two initial side effects that mostly went away within a month of using HU.

[Innessant]

Hang in there, I started on HU six months ago after 10 years of PV and blood letting. Seems to have stabilised my bloods and zero side effects. I love it...and feel I must add support as this site often attracts only the negative comments. We are all so lucky to have modern medications. 50 years ago many of use would have been dead with PV

[Ginger1017 in reply to Innessant]

Thank you!!! Your words really help.. 😺 I am hoping these side effects just go away and the levels come down!

[Tapestry4]

I take mine at night so any side effects are not noticeable. My hair is shedding like crazy which I am not too happy about. Have been taking it for nearly 3 years and it keeps everything normal.

[Loubprv Volunteer]

Good morrow from a very soggy Cumbria!!

Don’ t worry one bit. Although Hydroxicarbamide is classed as a chemo drug it’s really really mild. I ve been taking two a day for 15 years for PV and all is fine. I can remember the first day I took it - those tablets sat on the table looking at me for 20 minutes before I plucked up the courage to swallow them. Bit of nausea and dizziness which soon went.

Your body is simply adjusting to what will be a regular visitor from now on. Bear with it.

As with all drugs every possible side effect under the sun has to be listed, including barely touching the things wash your hands et etc

Initially when I was going out I used to keep mine in my bra so I wouldn’t forget to take them ( I take mine mid morning always have we re all different ) which possibly wasn’t the best thing but did it for years until someone told me the instructions are not to touch them!!!

So far the 36 E’s are still hanging on in there sadly, I’d love them to shrink a bit. Damn nuisance big bosoms. I digress. Apologies.

I ve also managed to chew one or two in the past by accident. That was a strange experience they re a bit fizzy. Not to be recommended!! However washed my mouth out well and all teeth tongue and mouth are still normal.

What I m trying to say is, don’t worry. There are thousands of us guzzling this drug. No need to treat it like cyanide, but best not to chew it!! it’s going to keep you well, and I m sure the side effects will lessen in time.

All the best

Louise ( my real name) x

[Ginger1017 in reply to Loubprv]

Wow.... Thank you for taking the time to make me more comfortable with this drug. I am just going some of these symptoms from pv go away. Blood test results are the scariest but I guess I should just stay if it's google!!!!

[Loubprv Volunteer in reply to Ginger1017]

Hi

Well you know, we all have scary blood tests - when I was first diagnosed my haematocrit was 74. I ll post a photo of my face if I can. It was like a tomato. I think everyone thought I d taken to the bottle!! All will be well, hang on in there, be patient and you ll be fine.

[Jamesxyz in reply to Loubprv]

Hi Louise,

Thanks for writing this post, you made me laugh.

So many posts are so negative on Hydrea. Yet for many people it is an effective

treatment with little to no side effects.

[Loubprv Volunteer in reply to Jamesxyz]

we met up with some friends last week - one of whom is a psychiatrist. He has studied the effects of state of mind on chronic conditions and was interested in how I feel mentally.

I said I m very very fortunate, I have happy genes and am inherently up beat (my mother who is almost 101 is the same) I’m of the firm and absolute belief that state of mind, and cup half full helps hugely and he agreed.

On the other hand I do know that if you are feeling fatigued, in pain, or just plain rotten it’s so difficult to keep a positive frame of mind.

sometimes I might appear flippant on this forum, which is unintentional - my main aim is to make folk smile.

Laughter, positivity, talking, NOT a sense of hopelessness, exercise, a decent diet and staying hydrated are so important.

Best wishes. 😊

[Hocus58 in reply to Loubprv]

Hi Louise

Such an uplifting post, thank you.

There are so many negative things said about HU which makes it very daunting to be told that you need to take it. Thanks for sharing your experience.

Your recollection of the first time taking this med was exactly same as me. I took it out and was planning on taking it after tea but it sat on table until 23:55 until I eventually took it. In my mind I still took it on the day I had to albeit 5 minutes before end of day 😬 This was only last week so as a newbie on this med I am waiting on something, other than controlling bloods, to happen. No idea what…..just something

Being diagnosed in March of this year was a shock but reading your posts and actually feeling your positivity shine through really helps.

Best wishes 😃

[Loubprv Volunteer]

ps I have PV and I m 68. Cumbria is the Lake District north of England x

[Ginger1017 in reply to Loubprv]

I live in Michigan, USA.... But have cousins in Derby!!!!

[Loubprv Volunteer in reply to Ginger1017]

A small world on this forum x

[Swim360]

Hi Ginger1017,

I was diagnosed with PV in May and my red blood cells were bought back to normal levels very quickly with a combination of venesections and HU.

Initially I suffered from continuous mild headaches and fatigue. The headaches have now gone, and the fatigue is manageable so stay positive, it is a bit of a journey.

Best wishes

[Ginger1017 in reply to Swim360]

Thank you for your input! I just hope that I get the same results!

[RazB]

Hi, I have ET and I started Hydroxy many years ago - it took a few weeks/couple months to sort out the right levels. I remember being very spaced out and dizzy and had a couple of very odd times when I thought the pavement and table I was sitting at had tipped right up and over! I went with it and ended up on the ground both times! It was very odd but I guess it was just my brain adjusting to the chemicals. It all settled down after a while. Hope it does for you too, keep in touch as there is a lot of positivity, help and support on this group. Best wishes x

[Ginger1017 in reply to RazB]

Wow ...u really went thru it!!! Thank you so much for the words of encouragement. Feeling ok....day 3! Lol

[Meatloaf9]

Hi Ginger, I am 73 with PV diagnosed 5 years ago. I started HU about 18 months ago. I have so far never had any side effects whatsoever from taking HU. I had one phlebotomy at the beginning but have not needed any since. Started on 2 a day now take 9 per week. My blood counts have all been normal for the last year with no problems. I take mine in the morning on an empty stomach because I want them to be absorbed as quickly as possible, my theory. I also resisted taking HU for several months but then just jumped in. We are all different in how we respond to medications and how they work for us. This is just my experience not advice. Wishing you the best going forward.

[mhos61]

Hi there, I would just like to endorse all of the positive comments on hydrea.

I have ‘ET’ and have been on hydrea for nearly six years. I take one tablet a day Monday to Friday. It keeps all of my counts in check, which is great as my haematocrit was borderline at diagnosis too. I have had no issues to date other than the odd mouth ulcer in the very early days.

Good luck

[Ginger1017 in reply to mhos61]

Thank you so much! Feeling encouraged