HU and what it says on the script

Well picked up my meds today, had been putting it off, thought I would give it a try. I'm reading the long incredible list of everything that could happen, I know I should not have! My Gosh, Liver , Pancreas, blood cells etc. But the most mind boggling was DO not touch mouth, nose or eyes unless you washed your hands!!! so this medicine is sooo toxic but yet we are putting in our mouths. Please let me know how everyone handles this. So you can't touch the medicine but we are putting it in our mouths its almost like swallowing poison LOL??. I had talked myself into it because I figured I do not want to have a stroke or a TIA but I think this medicine is now going to consume me, not as much the disease but the meds, oh if they could just create a good pill! Thanks everyone, I had finally got my anxiety level down and now its back up. Appreciate any and all replies and sorry for getting so work up.

29 Replies

  • Hi Mickey, it does sound horrendous, doesn't it? I was taking Hydroxy for 20 years before a nurse told me not to touch it with my hands! By that stage I had (and still have, of course) myelofibrosis progressed from polycythaemia. All I can tell you is that with the use of hydroxy I felt more tired than usual, and whilst I had some hair loss it was always thick and healthy. I guess you have to look at your own situation and consider your doctor's advice. Ruxolitinib is now my drug of choice 😉 because hydroxy stopped working for me. Historically, it was pretty much the main drug used and many of us managed with it. It didn't really affect my quality of life as I continued to work and bring up my family. Best bet is to discuss our with your specialist to put your mind at ease. I wish you all the best and hope you can start to feel a bit better about things. Take care, Jeanette 😇

  • Hi Mickey, I've been taking hydroxyl for over a year now and never heard anyone mention the handwashing. As you say, quite frightening when you think we are putting it in our mouth. Keep well, Sandra

  • Hi, I have taken Hydroxy every day for 18 months with no problems, it is in a capsule so you can handle those like any other, just pop them in and swallow. I think the warnings are regarding the actual medication ie if you broke the capsule and the actual contents touched your skin. I had a bit of hair thinning and weight gain at the start but otherwise fine and don't worry at all about taking it, many people take it for years. I take between 1 and 4 capsules per day (I take it at night) depending on what my platelets are doing and I would much rather take it than risk a stroke and every medication has a long list of possible side effects, even aspirin and paracetamol so I wouldn't let that put you off if your specialist recommends it. Good luck and I hope this in some small way might put your mind at rest. Frances.

  • Mickey I know exactly how you feel I was diagnosed with ET and Jak2 positive last month, horrible isn't it. I also found the taking of Hydoxycarbamide more upsetting than the diagnoses and it took me several days to build up the courage to take my first one. 5 weeks later I'm feeling better than I have for years and the only side effect I've had is a funny metallic taste in my mouth from time to time. It's early days I know and I was told last week that I had to increase my dose at the weekends as one a day wasn't bringing the platelet count down. It worked and the level has come down from 950-430 in a few days.

    I look at it that I don't have a choice, I was told this is the first line drug given to most patients and one of the safest with the least side effects, what does one do? If we don't take the drug will will continue to deteriorate and feel unwell. I think we do have to handle it carefully, I wash my hands before and after taking it, yes it's toxic but so are most drugs. Drink plenty of water, at least two litres a day, I look at water drinking as my other medicine as I'm not good at it but it flushes the drug out of our systems as well as keeping the body well hydrated which is so important. I notice it straight away with headaches if I don't drink enough in a day.

    Ask your consultant as many questions as you can and take notes and keep asking questions on this forum, I've found it invaluable over the last few difficult weeks, there are lots of 'friends' out there. Go for it, I tell myself this could have been so much worse. Good luck.


  • My husband has just started hydroxocarbide on Friday he's put it off for months now.

    Seems like his pv jak2 is very active. We've been so worried about him taking this tablet.

    Hrs going back to see the hematologist on 6th November we hoping all his bloods will start to come back into range.

    He's taking 1x 500mg daily for now the consultant thinks he will need 2x 500mg but he's just going to see how he goes.

    He's only 43 so a young age to be starting this medication.

    We spoke to a guy in pharmacy on Friday he was picking up his hydroxy he's been on it a year with no side effects at all.

    We trying not to think about it and hope all goes well.


  • Tracey how is your husband doing? Same here with the two pills, only taking one for now, well really have not started yet, but will start this week. I did meet someone on facebook who is 62 and her hemo Dr say aspirin only until it get to a million. She is ET, jak 2 negative but her platelets are 900. whow there are sooo many different opinions on it, but a stroke does scare me. Your husband has PV? and not ET right? Thanks for the info.

  • HI

    My husband is pv jak2 positive.

    He's not been told to stop the asprin so he will continue until we see his consultant on 6th November.

    He said he's had a few uncomfortable stomach aches today but it's only day 3 taking the hydroxocarbide so time will tell.

    Think he's very nervous and anxious, but he said if it helps him to feel better then it's the way forward.

    He takes the tablet before bed so it's in his system through the night incase he has side effects.

    I will keep you posted.

    He works 12 hrs a day so his work is draining without having an mpn.

    He was given a gout tablet to take not sure how long he has to take this for!

    Good luck to you hope everything goes well with ypur medication.


  • Hey Mickey. I felt exactly the same when I read the script. The thing is drugs are powerful things. .. & this one works! You won't be touching the actual drug just the casing, it does its work once it's in the system & it has to be powerful to stop us producing so many platelets.

    I take mine at night so I don't get the tiredness some people talk of & I've truly had no other side effects. Drink lots of water (good for everyone to do) eat healthily (good for everyone to do) get good exercise & sleep (good for everyone to do!) & trust the meds to do their stuff.

    These MPNs are weird to get used to & a bit scary at first but once you get on with things & with life somehow it just settles down & the meds are just part of it. Focus on the positives - I'm grateful I found out I have ET cos I wouldn't have changed my lifestyle to look after myself so well - my energy levels are GREATER than before because I eat, drink, sleep & exercise well.

    I think we've all felt scared at some point. .. and we've all worked through it & come out the other side. Folks on here are amazing. .. this forum makes SUCH a difference.

    Sorry for the long post guys!

    Have a great weekend x

  • I love reading your posts LizzieET. You are so sensible and give really good advice. You echo everything I think.

    I haven't quite managed the sugar free yet, I still keep trying! But sometimes the lure of biscuits and cake gets me!!

    Have a great weekend. I'm making my Christmas cake tomorrow - with sugar.

    Judy xx

  • Hi Judy you have ET right? you only a couple a week? if I remember correctly? how high were your platelets when you started? Thanks

  • Hi mickey64,

    I have PV with ET. I lasted for 7 years just on clopidogrel and venesections. I started Hydroxy 2 years ago at the age of 59 when my platelets were around 800 to 900. I take 500 mg 6 days per week. I only agreed to start as I was nearing 60 and risk of stroke etc increases with age. I really have had no side effects at all.

    Best regards


  • Thanks Judy that so good to hear! I really love this site and all these wonderful people make a person feel so much better! :)

  • Hi Mickey. I can relate 100% to your concerns about what we're putting into our bodies. Actually, it was only when I started taking HU 3 weeks ago that I really felt that I have a bad health problem. And I'm one of the lucky ones whose only problem has been high platelets and enlarged spleen. But it is so much better than blood clots going to heart, lungs & brains. Death, paralysis or other clot related problems are no fun. Two years ago I was in ICU close to death from blood clots in my lungs. BTW, my doc said no need to glove up: safe to touch pills and bottle but I'd recommend washing your hands after touching pills. Instead I tap the bottle until a single pill falls into one of those Sunday through Saturday pill holders. Then each day I simply tap the open container above my open mouth and the pill is ready to be swallowed with a full glass of water. So far I've had no adverse effects except chapped lips. I read a great point from someone else that just because you start it you can always stop it later if problems develop. Good Luck, you'll be a pro soon! Katie

  • Thanks Katie

  • First thing I do when I collect my prescription from the hospital pharmacy is bin the info from inside the box, I read it when I first started on HU just over 2 years ago and decided it wasn't half as much fun as good thriller! I've had one or two side effects but consider them better than a stroke! Lots of people have been on the drug for years. The manufacturers have to put every possible (and very likely impossible) side effect on just in case we decided to sue when we lost 3 hairs from our heads! I wasn't told not to touch it but as it is in capsule form presume it is ok to do so.

    Best wishes


  • Hi Mickey. Even now I find it difficult to see past the poison/toxic view of medication. For six months I've struggled with Hydroxycarbamide in many ways. Each of us responds differently and how I wish I was one of those lucky enough to feel better and carry on as normal! Though to be honest I'm no longer sure whether I suffer side effects of med or symptoms of ET.

    I've had loads of support from the lovely people on here and am sure you will too. I wish you all the very best x

  • Hello Mickey, great responses. . You're right it is mild poison to kill off excess cells which works very well generally. Trouble is its like a blunt instrument as it can't differentiate between cells to go and healthy ones hence tiredness etc. . But it does work well for most over many years at reasonable cost to NHS which is a driving factor.

    I recall taking my first tablet 9yr back and then waiting for something horrible to happen. It didn't. I was just diagnosed and still kind of in shock and then given this cytotoxic drug to swallow, and I was scared. . It did take me a while to accept this was my 'new life' from then on but as the years passed I tolerated HU so well i became blasé with it. I used to take them at half past 4ish then go down my club and get my first pint at ten to 5, not recommended of course. .

    Yes the psychological impact of taking this type of medication shouldn't be under estimated. . Good luck my friend . Chris

  • Hi Chris you are sooo positive which really give all of support! I love the part take around 4 and then go to the club! LOL. So 9 years ago did you have ET and then progressed to something else? I did see a seminar where they claim the Drs say the stem cell transplant is a cure, so I am praying for you that it is a total cure! Thanks for all your support!

  • No I had Primary Myelofibrosis, with high white cell count, weightloss, night sweats, and an enlarged spleen, so was a candidate for transplant with 2 or 3 years, just I manged to somehow buck the odds and squeeze 9 yrs. . Yes it can be a total cure but it's a tough nut to crack. Time will tell but I'm optimistic that I will get a result because 'failure is not an option' . . . . My best winging it's way to you. . Chris

  • Hi

    You know, I really wouldn't worry.

    Have you ever read the possible side effects in aspirin ibuprofen or a mild antibiotic?

    I was given a vile antibiotic for 7 months which caused far more damage than I think hydroxi ever could.

    The drug companies have to cover themselves against the wallies who might decide to open a capsule and sprinkle it on their cornflakes I guess.

    I've been taking hydroxi for 6 years and thank the clever people every day who developed this stuff because it is in fact, basically probably keeping me alive.

    I'm always forgetting to wash my hands after handling and so far I and my family seem to have escaped dire trauma!

    Yes it's a chemotherapy drug but very MILD which is an important thing to remember, other we couldn't possibly take it long term.

    Go ahead, there are lots of us out here gobbling the meds every day .....



  • Great to hear from you Louise, , and you're right it's a very good drug really coz mostly it does just what it says on the 'tin'. . Like you I used to think myself lucky and give thanks to the clever bods who brought it to market. . . Don't be be a stranger. . X

  • I agree but its just that its a chemo drug and we all know chemo does, it kills good cells but I do not want a stroke that's for sure, just wish and pray this would go away but it ain't happening, but so glad I found this forum and all these wonderful people! Thanks again!

  • Agree with others on here. I have taken Hydroxycarbamide for 10 years now and it has become part of my daily routine.

  • Hi Micky64

    Know how you feel, been on Hydroxy now for two and a half years for my ET and was very scared when I was told how toxic it was, so I just dispense it into a little plastic shot measure, swig them down with a very large glass of water, and make sure that I drink plenty of water through the day. I treat the drug just like my Thyroxin, and blood pressure tablets I NEED THEM so just get on with it, now part of my daily routine I have had more of a reaction from the flu jab this year which I found really strange. It is the lovely people on this forum that have inspired me to get on and enjoy life.

    So as long as you enjoy life live it to the full, take your meds drink plenty of water, eat plenty of fresh fruit and veg, and take lots of exercise. Keep smiling😀 And stop worrying.

  • Aye, here here, well said that lady. . x

  • Well we are all in the same boat, so we need to sail through calm waters not those rough stormy seas, anyway I don't like being sea sick. Like you Jedi we have to face it full on with courage and faith that we will have a light at the end of the tunnel, and we all need that in our lives so that is why this forum is so great. X

  • Hi Mickey64

    You've been given great advice ,

    I have ET jak2 Pos , 2 years now since my TIA ( so scary ) I have a few memory problems now but still count myself very lucky to escape any permanent damage ,

    I've taken HU for 2yrs now , it's no green eyed monster like I thought , in fact every day I'm greatful I'm able to pop this pill ,

    So what I'm trying to say is focus on the positives of this wonder drug eat & drink healthy & it will take care of you ..

    Take care

    Pam X

  • Hi Pam so glad to hear these stories and all the wonderful support, I think I could fill some water bottles with all the crying I have done over the last couple of weeks, LOL. thank you!

  • I did the same as polliwog and it worked for me. I had the same thoughts as you did .

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