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MPN Voice
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First Hydroxy

Well I have just taken my first capsule ate 2 biscuits and 2 glasses of water but I am sure I can still feel it. It took me ages to actually take it, I know some of you have said the first one is the worse one but I can't believe how hard I found it. I really tried to remember this is going to help protect me and to think of it as a positive thing , please tell me it will get a bit easier.

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The first is definitely the worst. I put it off and put it off, and was pretty much a wreck. And then days, then weeks, then months went by, and nothing bad happened. Platelets went down after a couple of dosage tweaks. It’s been nearly a year for me and of course others on here have taken it for years - and are just fine. I sure empathize with how you feel but I can assure you it absolutely will get easier. Hang in there.

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Thank you so much , I really appreciate you replying, I feel so anxious Im not sure I will sleep. The Dr told me to take it at bedtime. Is that what you do ? X

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I take mine (one one day, two the other) in the morning. Make sure you drinks lots of water with - and throughout each day.

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I wonder why she told me to take it at bedtime. X

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I think some people find it makes them drowsy so might as well go to bed. I haven’t found that for me. But what I have learned from this forum is that people react differently to the same thing.

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I take two 500 Hydroxy every morning. I read the instructions and it says can be taken anytime of day, drink lots of water. No problems.

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Hi Jodary

Hey can you tell me how high did your platelets get to start Hydox?

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They have been stable inthe 800s for the last few years but then rose to 1025 and then 1230. As I am 60 I felt I didn't have a choice but to start treatment. I have always been against it. X

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Yes my Haematoglist told me as long as the under 1.2 million I don't have to be on any of those meds. My Platelets are sitting in the low 700's Long may they stay haha. I am now 67, but has the Haem told me ore important to look after your cardiovascular health, so that's all I am doing. I feel like you, I do not want to take any medication, I just don't like the thought it. Not if you don't need them of course. Good luck, hope it goes well. xx

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Well done! It’s just a psychological thing taking that first tablet. I promise you, it will become routine after awhile.

I take mine after my evening meal with a full glass of water. People on this forum take theirs at various times. Try not to make too much of an issue of it, as the anxiety could create symptoms that you may blame on the tablet. Take it and just forget about it. Once you see the results in your blood counts and the significance of that, you’ll be reassured. It will all get easier.

Mary xx🤗

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You are right, I suffer from anxiety badly any way and had built it up so much I was in a right state. My stomach kept me awake making terrible noises which fuelled my anxiety and I feel awful this morning. I am so so anxious in case I can't tolerate it I always get side effects from medications .I really want to be able to cope with it and get my counts down as they also make me anxious. I feel in turmoil x

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All will be fine, you will soon get used to taking them. I used to take mine in the morning but now I take it about 1 hour after my evening meal along with my other meds.

In fact, a couple of weeks ago for two nights I took an extra two before bed thinking they were paracetamol. They had managed to find their way into the incorrect box! I reduced my dose for the following few days so that my total for the week was correct and there were no ill effects. For me, it’s just another tablet (6 years in)

Judy x

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So scared of getting side effects but now so scared of not taking them. I wonder if I would be better taking it taking it after my evening meal after the noises my stomach made whilst I was trying to sleep. X

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Your tummy noises were probably from the 2 glasses of water. 😂 Try taking it a little earlier. I only have 1 glass of water for all my meds but I do drink lots during the day. I have had no side effects at all in the 6 years I have been taking it. Apart from a few mouth ulcers occasionally. My dosage has changed over the years from 7 per week to 9 per week and have now been settled on 8 per week. I feel safe in the knowledge that it is helping to prevent stroke/ thrombosis which scares me much more that popping a pill.

X

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It will get easier!!!!

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Hi I take my aspirin after breakfast and Hydroxy before I go to bed which I was recommended to do by the haematologist, it suits me. I was diagnosed with ET + Jak 2 4 years ago. I remember taking my first tablet and thinking it was the end of my life, my hair was going to fall out and my skin was going to erupt plus a whole load of other side effects. I can't say I've had any from the drug just expected tiredness, aching joints/bones and headaches especially when I don't drink enough water which I find more difficult some days than others. I look at it now as another medicine as I feel so much better when I keep the water intake up.

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Exactly describes how I felt about taking it !!! X

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Take it from me I felt the same , why are you so scared ? you need it take it, if does not agree with you , change it ,not OH my God !! its a chemo drug , if it helps with your condition all the better you can always change. Scare mongers are every where just take it been on it for 4 months now, sure it was scary but after the initial shock of having to take it, not had any side affects to speak of except for the initial oh my god not a chemo drug. Hang in there

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Thank you !!! X

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I was exactly the same, worried about starting Hydroxy but knew it was what I had to do. My platelets were at 1300 and over two years and a few tweaks they are just below 400. It will get easier and you need to find a time that suits you when to take it. Everyone is different.

Good luck x

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Thank you I don't know what I would do without this forum. Its the fear of all the side effects that scares me. Whatever i take I get side effects. Antibiotics or anything. Its just what happens to me x

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I would have said the same about me. Often medication even has the opposite affect to expectations BUT after putting off taking hydroxy for nearly 3 years I started a few months ago after hitting the 1500 mark. And now I feel GREAT. I hope the same happens for you.

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I really hope do thank you. Is it normal to feel a bit nauseated next morning or is it my anxiety again x

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By the time I finally started on Hydroxy my platelets were 1700 so taking it was a no brainer. But like many others I swallowed that first capsule in trepidation and waited for the world to end. Of course it didn’t. My numbers tumbled. And I felt like I’d got my life back. No side effects. A year on I really think nothing of taking those capsules. The only thing I’d say is at the beginning I’d always swallow them with two glasses of water before bed. Net results. Half a litre of liquid sloshing around my guts and a disturbed night going to the loo. Just take them with half a glass now and all is well. You’ll be great.

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I will thank you x

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It is scary when you first go on any drug, especially one like hydroxy. I met a lady at clinic last year, she was in her 80's, and she had been on it for over 20 years without any problems, so you may find it ok. I took it without problems for 3 years then got ulcers on my feet and was changed to Anagrelide which I have been on for around 3 years now. I too get anxious about all sorts of things, mostly completely ridiculous, but that's the nature of anxiety.

Best wishes

Lizzie

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Anxiety is a curse. I have actually made myself really ill since xmas due to some stress and then worrying a out this treatment. So I feel ill anyway without the actual pills x

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I'm quite lucky in that I only have to take one tablet four days a week - Monday. Tuesday, Thursday & Friday. I've been on it for over four years with no side effects.

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Hi Jodary, I’ve always taken Hydroxy at night, hoping that if there were any ill effects then I would sleep through them...seems to work for me. The one major thing to have an impact on my fatigue on the days I feel it, seems to be drinking lots and lots of water. If I drink less on a particular day, I certainly know about it the following day!

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I’ve been on it now for over 11 years. It was scary at first and I hated taking it every day but eventually I got accustomed to it. I take two pills at night now but I used to take morning and night because they do make me drowsy and I need to work. Also, keep your hemo up up date regarding any side effects. My dosage has been adjusted several times over the years and now I take Jakafi and baby aspirin, as well.

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I've been on Hydroxy for 18 months. My dosage went from 500 mg 3 x per week to 5 x per week, and now I take 500 mg daily. I took it at night for a while, but it affected my sleep (gave me what I call the heebie-jeebies), so I went back to taking it in the morning. I take it after eating with a full 12 ounces of water and then drink 12-plus ounces every hour or so until noon to dilute it in my stomach. This seems to work well to keep it from making me dizzy or nauseated. If you still feel a bit of nausea, keep some crackers or a banana handy to nibble on. Not letting your stomach get too empty before it passes through seems to be key.

Though I noticed the side effects when I first started taking it, I only notice them now if I haven't had enough water (or food) in those first few hours of taking it.

Hang in there and best wishes!

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Hi, all the best. Been on Hydroxy over 2 years now and platelets down from 950 to a healthy 400ish. I used to take mine in the mornings but kept forgetting so now I take them at bedtime. I get quite thirsty at night and always have water by my side. I actually struggle more with swallowing my aspirin than the big hydroxy tablets.

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Thank you, I did struggle eith the capsule I must admit. C

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You have heard from our fellow MPNers who have had success with HU treatment, which is great as some truly benefit from HU and do not experience significant side effects. Please let it be some comfort to you to know that even if you do encounter problems, it can be dealt with. Taking a single pill, or even multiple weeks worth of them, is very unlikely to result in anything catastrophic. Side effects tend to come on gradually and can be addressed by a change in dose or by discontinuing the HU and trying something else. I just came off a year of HU and had to discontinue as I am HU intolerant. Nothing happened suddenly and the side effects were not life-threatening. (mouth ulcers, thrush, constipation, thickening of skin on tongue, etc.) All of the chemo options for MPNs have both risks and benefits. Doing nothing about your MPN also has significant risks. Most of us with ET and PV deal more with quality of life issues with both the disease and the treatment. Relax and know that you will work out a treatment approach that will work best for you. I do favor taking the med on a full stomach. I preferred with breakfast so I could stay well hydrated throughout the day. Can't be drinking much right before bedtime and sleep through the night! FYI - Per my doc, moderate consumption of alcohol is OK with HU. I would favor a beer and pretzels to water and biscuits! Perhaps a trip to the pub is in order. Suggest that the best thing to do is to go out and enjoy yourself - relax and have fun - recreate with abandon! Fretting about the MPN and its treatment will just get you down (as I know from personal experience). I found that being fully informed about the MPN, understanding the risks and benefits of each of my treatment options, and having people to talk to made it all manageable. Al the best to you.

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Thank you it is reassuring to read that sife effects come on gradually. I have bern struggling with a headache today probably from the stress I caused myself and was instantly fearing it was a sude effect. Have been drinking loads so hopefully it will disappear now Ive calmed down a bit from all the support. X

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Definitely lay off the self-inflicted headaches. Ouch! It really does help to just go out and have some fun. Not sure what your fancy is, but go do it with vigor.

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Xx

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yes I promise you will feel better. I really understand this feeling. I was so nervous the first few days, but glad to say a year on and I remember everyday that the doctors are brilliant at helping us.

The tabs will keep you well and stop you having a stroke or some horrible clot.

Touch wood no side effects either.

Take care feel welcome to post if you have any worries.

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Ive given myself a headache and then panicked it was a side effect ! Spoke to MPN nurse as I get so anxious who wasn't concerned x

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today is my 2nd day taking hydroxyurea for PV and i am so scared after reading about all the side effects. i am trying to be positive as i have been having phlebotomies for 3 years and my platlets and red blood cells are still high.

jodary i can truly understand your anxiety and know you are not alone!💕

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Hi , its scary isn't it. Especially the first one. Unfortunately for me I gave myself a headache by being so anxious and have spent all today worrying about the headache. The fantastic support on here has helped so much. I bet in the future we will be reassuring those just starting out. ! So chin up ! Xx

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Been taking mine for 7 years now, no ill effects that I know of, glad to be still here.

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Wow, I can only hope I don't, trouble is I seem to be sensitive to medications of any kind and try to avoid them but obviously can't avoid this one xx

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