MPN Voice

Hydroxy dosage

Hi Everyone. Hope you are all well. So tomorrow is the big day. Im starting on Hydroxy, 2 tablets a day. Just wanted to ask is it ok to take both tablets together or is it best to take them one tab twice a day? I had hoped to take them in the evening after dinner but wasn't sure about taking both together.

Regards

Mandy

39 Replies
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Hi mjfin,

It’s fine to take them both together. I take mine about 9 pm.

Best wishes

Judy

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I take two hydroxy tablets and one baby aspirin after the evening meal - with a glass of water.

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Hi ChrisAnnSen

Thank you for replying. Have to increase my water intake. Not very good at drinking the recommended 2 litres.

Regards

Mandy

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Hi, I always have a plastic bottle of water with a nozzle on it by my bed. I think you may find that you will be a little thirsty so downing that water won’t be a problem. I Was drinking too much and iI hate water lol x

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Hi Judy

Thank you for replying. That's great that can be taken together.

Mandy

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Hi, I was told to take mine at night because they do make you tired. Yes take them together.

They are a good sleep aid!

X

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Thanks Wyebird. I think i will try them in the evenings and see how I go.

Many thanks for replying

Mandy

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As you have been reading on this website you can see what others recommend.

As I have other meds to take through out the day I chose to take mine at 2pm.

If I was going to have any issues I would only be dealing with the hydroxy.

Remember to a) take it with at leased two glasses of water.

B)try not to touch the tablets with your hands, I put mine in an egg cup then toss them down quick.

C) don't take them out of its capsule.

I have had no issues with mine except a slight dry taste in my mouth.

This has worn off.

My team just advised me to take them every day.

I keep a book and tick off when I have taken them.

Never double up on your dose, and if you have issues of difficulty refer back to your team.

Good luck.

I have been on them for six months and my platelets are now within normal limits so I am over the moon.

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Hi Roger41

Thank you so much for your helpful advice. My consultant has also given me a tablet to take daily to protect my kidneys so I'm going to take it in the morning with my aspirin and take the hydroxy in the evening. So glad to hear your platelets are within normal range . Mine are almost 1.2 mill and have been for about a yr now so to get them lowered would be fantastic.

Fingers crossed.

Thanks again for responding

Mandy

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Hi, looks like I'll be on them soon and noticed you said that the doctor had given you a pill to protect your kidneys. As i only have one kidney now due to kidney cancer, I'm intrigued to know what this tablet is ? Cheers, Ian.

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Hi Ian. Sorry to hear you have lost a kidney to cancer. That must have been a tough time for you. Which mpn do you have? I have ET mpl gene. The tablet the doc has given me is Allopurinol. He just said it was to protect the kidneys while the hydroxy and your body are breaking down the excess platelets. I don't think I have read on this forum that anyone takes a tablet for kidney protection. Must ask him is that the norm when i go back for review in 2 weeks. I have taken that tab this morn and will take my hydroxy this evening .

Wishing you well.

Mandy

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Thanks mandy. Five months after being diagnosed with ET (calr) i was diagnosed with the kc. One lucky sod hey. I'm obviously very protective of the remaining kidney and the thought of putting this crap through it fills me with dread ! My count is currently 1.2 million and if it rises to1.5 then i have to go on them. I haven't heard of this tablet but i will be looking into it. Thanks ever so much for your reply, all the best to you mandy.

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Allopurinal is often prescribed with MPN to ptevent Uric acid build up leading to Gout which happened with me and ruddy painful too. It can also be used to prevent or pos break down kidney stones. I'm taking it still post SCT coz if you have been on Ruxolitinib before transplant doc says you are more prone to gout which also happened to me very soon after my SCT. So worth taking in your case I'd say . . Cheers

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Hi jedireject. Thanks for explaining about Allopurinal. I have had my uric acid levels checked as one of the symptoms i have is pain and stiffness in my feet with random really sharp shooting pain in my big toe. I did ask could it be gout but my gp said it wasn't and uric acid levels were fine.

Hopefully it won't ever come to that, as painful as my pains are they are very random and short lived and I understand gout can be incredibly painful. Hope you are keeping well. Have read your posts. You have came thru a lot .

Its people like yourself and others that make this forum a wonderful group to be part of. I don't post very often but I always check in. I hope that once I have got into a routine with the meds I'll be able to offer some advice to someone starting off on their journey with their mpn.

Take care

Mandy.

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Thanks Many, , trust me you don't want Gout it is debilitating and at its worst extremely painful. Don't be afraid of taking your HU as they are a necessary evil . We are all different but I tolerated them very well and I was drinking heavily at the time and would swallow them just before I went to my club but obviously I wouldn't recommend that and it might have reduced their effectiveness. Anyway it's amazing what we can tolerate as during and after transplant I was taking over 30 tabs a day . I'm on fewer now but they include Ruxolitinib.

Take care I'm sure you will be ok and your level will drop, I'd love to take some off you as mine aren't too good.

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Cheers mate

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My goodness you have been thru the mill!! Def worth asking about the Allopurinal as jedireject says. You def need to look after your other kidney. My platelets are just under 1.2 mill also but I have quite a lot of symptoms going on so consultant decided to start the meds. It has taken me a few months tho to get my head round it. Was supposed to start them in November but put it off!. Anyhow today's the day and feeling ok about it. Fingers crossed will be plain sailing 😊 take care.

Mandy

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If i can be so bold as to ask your age, I'm 57, tell me to get lost if you like 😂 but it would help put an age to symptoms, if you know what i mean. I did take hydroxy for two weeks prior to surgery to reduce my platelets as the anaesthetist wasn't happy putting me under at that level. They reduced sufficiently with thankfully no side effects in that short time.

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Its not a problem. Im 46. Diagnosed in Sept 16 tho its likely I've had it since 2011. Dont know if you've read my earlier posts but I initially went to my gp with joint pains in my hands and feet. Tests were done to rule out rheumatoid arthritis, menopause and auto immune disorders. All clear tho an auto immune disease could still a possibility however thats when they flagged up that my platelets were high. In 2011 they were in 600's, at diagnoses were up in the 800's and now almost 1.2 mill. I now suffer from tingling/crawling sensations in my face, head and legs, muscle weakness, blurred vision, fatigue as well as joint pains. Prob forgotten a few 🙄oh yeah brain fog!! So I'm hoping that some if not all my symptoms ease/disappear with hydroxy. If not I'm a yr in on a yr and a half waiting list to see a rhuematologist.

So just taken my first 2 tabs. Fingers crossed 😊

Best wishes

Mandy

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Ha theres the brain fog at its work again......Im 45 not 46. 🙄

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Cheers mandy. Yeh, I've got the brain fog , fatigue and muscle weakness. Ironically my haemotologist denies any symptoms ! I've told him he needs to start believing his patients as we don't make this stuff up !

I'll follow you now so i can see how you get on . All the best mandy 👍

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take them anytime but with lots of water, so I found not at night as u have to get up early to pee!!

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Hi jane13.

Thank you for your reply. Thats something I'm going to have to work hard on as I know I don't drink enough water so the increase will likely have me up during the night anyway 😕

Regards

Mandy

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Hi Mandy

I take 3 a day as well as 300mg aspirin, I take them all together, in the morning. On a rare action I feel sick but that goes off. I agree drinking lots of water during the day.

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Hi Wendycu

Thank you for replying. Much appreciated.

Mandy

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I take 2 a day 4 times a week & 1 a day 3 days aweek with my breakfast. Have to do it in the morning or would forget later. No problem with taking2 together.

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Thank you so much for your reply. Much appreciated.

Regards

Mandy

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I take my 2 a day first thing in the morning with no noticible effects. It's amazing how quickly you get used to drinking all that water every day. I just have my bottle beside me and just keep having a mouthful. The odd day I have maybe been out for a prolonged length of time without my bottle, I found I missed it.

Upside is you get lovely skin and sparkly eyes!

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Hi Mica11

Thankyou for your response. Its good to hear you have no side effects taking it in the morning. Once I'm on them a while I may take them earlier in the day. Suppose I'm just being over cautious in case I do feel bit nauseous. I work in a school so to be feeling tired or a bit off wouldn't be good. Need to have your wits about you 😊

Thanks again for your helpful response.

Mandy

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Hi Mandy

I take mine together every day after my meal. It's fine to take them together.

Angela

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Hi Angela.

Thank you for your reply. Much appreciated.

Mandy

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I was taking mine together in morning

2 at a time. Have been getting light headed so I will now take twice a day. Hope that helps

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Thank you for replying. Much appreciated

Mandy

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Hello. I was asked to take 2 HU daily and started taking them together. This did not work for me as I was getting cramps at the back of my head and down my left leg. I changed the way I was taking them to one at 2pm and one before I go to bed. This is working fine for me. I guess everyone has to figured out by trial and error what works best for them. I have been doing this since June 2017. I do hope you do not have any problems with the drug. Basically, I have no side effects and I feel fine as my platelet level is now within normal range. Good luck with your meds.

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Hi Trinigirl. Thank you for your reply. It def seems to be trial and error working out what works for you. Glad you have found what suits you and are doing well.

Best wishes

Mandy

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I take mine after my evening meal about 6pm it means I can sleep through the hydroxy ‘hangover’ I feel poorly if I have ended up taking them late or during the day. X

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Hi Chelle. That was my thinking.... sleep through any side effects if there are any. Fingers crossed there won't be tho.

Thanks again

Mandy

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I’ve never been advised when to take mine so I take them in the morning at the same time as my other meds ie thyroxine, colodogel, blood pressure omeprazole.

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Hi Monut. It definitely seems to be whatever works best for you. Ive just had dinner so going to take mine in a little while.

Thank you for your response.

Take care

Mandy.

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