I've to start on hydroxyurea

[Lainy1]

Any advice would be appreciated.

Best wishes lainy 🤗

[bordeauxgirl]

Hi Lainy1, Just a quick thought, just don't panic.....eat something with you Hydroxy it will coat your stomach and stop it from being irritated. Good luck I hope the pills work as well for you as they seem to be working for me. Best wishes June.

[Lainy1 in reply to bordeauxgirl]

Hi June,

Yeah I hope it does what it should and dont nees to incrase dosage. Might be being too hopeful there tho 🤔

Will start it tomorrow. Did u find it affected your skin and hair ?

Lainy 🤗

[bordeauxgirl in reply to Lainy1]

Hello again , Good luck with the tablets , always keep hopeful that they will work, if you have to increase them at anytime ..go with the flow. I am 72 years old and notice my hair is thinning but that might have started before diagnosis so I can't realistically blame Hydroxy, but as for my skin Nothing has altered, I make sure I use nourishing cream every day ...just in case. If you are a guy then don't worry about moisturising all my boys do... and if you are a girl then you probably already have a regular moisturising habit. June

[Lainy1 in reply to bordeauxgirl]

Hi again June,

I'm a girl and take great care of my skin. I know it should be the bottom of my priorities over a blood cancer. I read that one woman had huge sores on her forehead. Hope I don't experience that.

Lainy 🤗

[piggie50]

Hi Lainey1,

I have been taking Hydroxicarbamide for nearly three years now. I started on 500 mg per day and my platlets went from 900 to 400 in four weeks. My dose varies now slightly depending on blood results. I have had no side effects, hair is no different and skin is very dry but it was dry before I started the hydroxy. I take mine at night before I go to bed. I hope it's trouble free for you.

Best wishes

Judy

[Lainy1 in reply to piggie50]

Hi Judy,

Thanks for your reply.

Bloods taken today were back before I left outpatients, now at 1450. Quite scary when you look at the drug on mcmillan website. I have mixed feelings tonight about taking this tomorrow. People I meet and know all say "you will be fine". I know they mean well but in my head I say "well you have it then" that's not very nice of me and I'm not normally like that. So I'm blaming g ET for making me feel like this tonight.

Best wishes lainy 🤗

[piggie50 in reply to Lainy1]

I know how you feel, I had 7 years of venesections before starting Hydroxy. My buddy put it into perspective and really helped me come to terms with it. For me, to be blunt, I would rather take a pill a day than have a stroke.

Let us know how you go.

Judy X

[Lainy1 in reply to piggie50]

Hi judy,

I supose im lucky that i dont need to go through venesections. That must ahve been a terrible time for you. How true that is, one little tablet reduces the risk factor of stroke or even worse things.

Stay well and best wishes lainy xx

[tracey13 in reply to Lainy1]

Remember if it doesn't agree with you there's other medication you can take.

My husband was so scared to take hydroxy, but he worried for nothing he's been very lucky.

Lots of people take this and and are fine.

Good luck don't put it off.

Tracey

[Lainy1 in reply to tracey13]

Thanks Tracy, it'now doing its magic with my platelets hopefully.

Best wishes lainy xx

[tracey13 in reply to Lainy1]

My husbands platelets are almost in range now x

[Betsywest]

Hi lainy, it's probably no help saying this but I saw my consultant today & we discussed future use of HU..but I am lucky for now that I don't have to start it straight away but he tried to reassure me that they use this drug for babies to treat sickle cell anaemia & it really shouldn't be a drug to be feared.. I know I'd be feeling just like you are if I was facing my first pill now but fingers crossed it will serve you well. Best of luck with it & really hope you have no ill effects from it. Keep us posted on how you get on x

[mhos61]

Hi Lainy, I have been on hydroxyurea for nearly a year and take one 500mg tablet daily Monday to Friday and week ends free. I have had no adverse side effects. I take my tablet after my evening meal with a large glass of water. I think my skin has become slightly drier (could be age) but nothing significant. I suppose I'm on a relatively low dose compared to some people though. I'm at the clinic tomorrow - so hoping there will be no increase in platelets that would determine an increase in medication.

I think the worst thing psychologically is taking that first tablet. Once you've done that it will get easier. I'm sure it will help in alleviating your troublesome symptoms.

Good Luck

Mary x

[Lainy1 in reply to mhos61]

Hi Mary,

Hope all goes well at the clinic today for you. I was thinking of taking mi e right before bed so I sleep through and side effects. I was super sensitive to asprin and my GP stopped it straight away and I'm now on clopidogrel. Here is hoping I will tolerate hydroxy well.

Let us know how you get on with today's appointment. I'm back up to the hospital today too for CT scan of aortic arch and both carotid.

Best wishes lainy 😙

[Sand-Dancer]

Hi Lainy. I have been taking Hydroxy for over five years now. I take aspirin and cod liver oil in the morning and Hydroxy before bed. I seem to tolerate it really well so this works for me. Like everyone else I would rather not be taking it at all but hey ho! It seems to be the best option at the moment 😀 Lesley x

[Lainy1 in reply to Sand-Dancer]

Thanks lesley,

I just feel I was getting over the initial shock of my diagnosis and thought (convinced myself) it's would just be a case of live with it and watch and wait.

My haem at my local hospital said she would have started me on treatment straight away and not bothered with a BMB that the consultant from another hospital did as urgent.

It's amazing how wide the range of tests and treatment varies from one consultant to another. Oh well BMB was done and it gives them baseline for any future ones but I would rather not have had it if I had seen the consultant I'm with now. So guess I would have had 6 weeks or so of hydroxy by now and not looking at my first today 😣

Best wishes lainy xx

[Sand-Dancer in reply to Lainy1]

I am sure it will be fine Lainy x x x

[Myboys333 in reply to Sand-Dancer]

If you do t mind me asking what are you taking hydruria for?

[Inca]

Don't worry Lainy,been on Hydrea for 7 yrs,high or low dose depending on monthly blood tests,I am 77 now,yes have down days ,but generally carry on as I always did.You must keep hydrated,take care in the sun,use a good moisturiser after showers ,baths as skin does get drier.You might take a few weeks to adjust to the med. but it really works for us,rest too ,is important when it's needed....over the years I find taking it at night works for me and many others,you may have to try different times. Best of luck and most important do not be afraid of taking a drug that keeps you alive!!! Hair ,I nearly forgot, mine is fine ,always was ,but is the same ....a really well known Aussie shampoo,really 'volumes'it !!! Sally

[Lainy1 in reply to Inca]

Thanks Sally,

Going to to ask my GP if they will prescribe sun cream. I know of some people who get it on prescription. Can only ask for my next trip abroad. I try and moisturise after showers bit busy lifestyle does not always accommodate for this. Will try much harder now tho. I have really thick long curly hair so might not see any difference 😕

One thing I manage to do is stay hydrated.

Best wishes lainy 😚

[Bridie123]

Hi lainy, I started taking hydroxy last November, it is the first few that are the worst. Not that anything is going to happen. It's just standing there with those pills in your hand! I take mine in the morning straight after breakfast because I feel it is very important to drink at least a pint of water straight away, so there is plenty of fluid while they are breaking down in the stomach. I take 1000 mg a day and my clopidogrel at night. I try to drink 3,4,pints of water a day to ward off any sickie feeling, ease constipation. I've ended up taking pills to help pills that cause problems! Your skin? Don't worry. I too am passionate about skin care and nurture it,and what with all the water, I have never looked so good skin wise, the only downside is people will be looking at you skepticaly saying, but you look so well. 🤔luv Carole 😊

[Lainy1 in reply to Bridie123]

Thanks carols,

Made me smile about the skin comment. I've never got my water bottle out my hand. It's cucumber water today.

Best wishes lainy xx

[Mal42]

Hi Lainy. I understand your panic. I was put on Hydroxy this year and went into a real dip, all my feelings about having PV and the venesections that I had suppressed put me in such a bad state. I am on 500 mg and have had no problems really. and my bloods improved. I did still have to have a venesection but it is early days so fingers crossed. Good luck, what a great place this is for supprt and understanding.

Mal

[Lainy1 in reply to Mal42]

Yes I totally agree, I don't know what I would do without everyone on here.

Thank you all very much lainy xx

[skipperL]

Don't despair Lainy1, I think reading about all the possible side effects online is apt to terrify you. I have been on 500mg every other day for a month, which was increased two weeks ago to every day from now on - no significant side effects yet except vertigo a few times, and I have noticed my skin is getting dryer, so I am slapping on the body creams with abandon. (so far Body Butter by Clinique seems to be working) I am 78, with very thick hair, I am waiting for it to get thinner - inspecting my brush all the time - I know it is vain, but it is one of my chief worries ! Good luck with the Hydroxy - if your Haem has prescribed for you then he obviously considers it is necessary.

[mickey64]

Hi Lainy, I am from the US and I was on Hydroxurea when I was first diagnosed which was Nov 2015. I was on it for four months, not any side effects that I could not deal with, more annoying then anything. I did see two experts and they said no need for it until it gets over a million and I am over 60, going to be 66 so yes I worry all the time (are they right about this because that pill is not that bad). Now I do not have any other risks factors other then age and I have ET and my platelets hover in the 900's. Although I do have bad days and good days so taking the meds might make you feel better. My local wants me to try it again on a lower dose before going to pegasy (only because I work full time and pegasy can be rough in the beginning). So he gave me 300mg which I am going to try. They do give it to babies I think when you read all the side effects it scares us, but think this way everything you take prescription wise probably has a tons of side effects. You did not mention what you had? Do you have ET and you never mention your age or any other risk factors. Most doctors and experts will put you on medicine if you have other risk factors other then age. Look it does not hurt to try it and you will probably be surprised I think it is really the fact that is says "Chemo" so just don't look at it that way. Best wishes to you!

[Lainy1 in reply to mickey64]

Hi Mickley,

Thanks for your reply.

I'm glad you had such a positive experience on hydroxy. That fills me with confidence and hope I have same experience.

I was alarmed when haem said about a chance of it turning to AML. I have ET am age 48 and work as a staff nurse. I had a family member who passed away with AML a few years ago now (not a blood relative)

Haem also gave me allopurinol as gout is another side effect of hydroxy. Will take it tomorrow now as I've got a blinding headache again and had my CT done earlier today.

Best wishes lainy 🤗

[skipperL in reply to Lainy1]

Hi Lainy1 - my Harmatologist gave me Allopurnol, but only for the first few weeks thank goodness...

[Lainy1 in reply to skipperL]

Why only for the first week. I got a prescription as long as my hydroxy = 6 weeks supply..

[skipperL in reply to Lainy1]

He told me that waste cells from the marrow were a problem at first - but then he stopped it a few weeks in - I thought that it probably meant the Allopurinol was surplus to requirement - I hope he's right

[Lainy1 in reply to skipperL]

Mine told me hydroxy can in increase the amount of uric acid which can csuse gout. That's why I have to take allopurinol. We all have different management of our disease.

Lainy

[skipperL in reply to Lainy1]

Think he meant uric acid was a waste product! My husband has had gout a few times and it's very painful, so I hope I don't get it. Going to see Haem on June 5 so will query it

[catwoman2015]

Hi Lainy , i started mine in sept , i felt the same as you .. i started on. 3 a week then 5 now i take everyday , i take mine after a meal , drink plenty of water throughout the day too ,i just feel really tired skin ok and was thinning before the meds just say to yourself this is going to help my platelets , i have other health issues going on so my fatigue can be caused by this and not meds we all feel different on Them , but its not as bad as we think , your be fine all the best Holly

[tracey13]

It's best to take a stomach protection tablet lansoperzole.

My husband takes his hydroxy at 6pm and he's never had any side effects.

He feels loads better in himself.

The word chemotherapy scares the hell out of people, but it's a very small doseage.

Drink plenty of water

Tracey

[Poppy6060]

Hi lainy I hope the hydroxy works well for you like you I am worried I was at hospital last Friday and need to start treatment I have been offered hydroxy or interferon I am 56 and have ET and PV has you are young was you offered both . I have a few weeks to think about this before I go back its a lot to think about . I know we need this treatment so trying to positive hope things go well for you best wishes Poppy 6060

[Lainy1 in reply to Poppy6060]

Hi poppy,

No I was only offered hydroxy.

Wonder why ?

Suppose my heam thinks it must be best for me.

Good luck in deciding which one to go with, I'm sure you will be looking at all the advice and make the right choice for you. Perhaps maze could offer some input.

Best wishes lainy xx

[Helpatlast]

Thinking of you Lainy - but do go for it and know those little capsules are friends to help you out and keep you safe. Daunting I know when first starting - I've been on HU ten years felt just the same as you when starting ! Was on 3-4 capsules a day in initial years and these days two per day - but found the body adjusts in due course to meds and it is such an effective treatment plan and you feel glad for it. All the best

[Lainy1 in reply to Helpatlast]

Hi,

That's it, first tablet taken. Roof of mouth and back of throat feels odd sensation. Hope this is normal. Ive drank 3L of water today.

Best wishes lainy xx

[Myboys333 in reply to Helpatlast]

May I ask why you take hydr