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MPN Voice
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Just took first hydroxy

Well, I did it. After spending most of yesterday worried and anxious, and going back and forth between “I’m not going to take it” and “I’m going to die” (okay, a bit extreme I grant you), I got up this morning, had a bunch of water, which I do anyway, and took the Clopidogrel — and then the Hydroxyurea. So it’s started - for life.

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Well done! I think I have mentioned that my stomach does not agree much with my medication, so I have started to take Kefir. I make my own and that is absolutely the very best thing I have ever done! If I had only known before, what good it would do me.It might not suit everybody but it is a real life saviour for me!

Don't worry too much !!!!

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Thanks Swede. And I’ll keep your kefir idea in mind, depending on how things go. Fingers crossed!

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Hi swede,

I take lanzoprozole at night before my medication so I’m interested in kefir. If you were not taking kefir do you think you would be taking something for indigestion?

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Yes.My stomach does not like my medication at all.It was really hard work as I had to plan the day,around me taking the medication. I used to eat kefir for breakfast as a child and adult until I moved to UK.I then got hold of grains and my husband now is obsessed with it! It really makes a difference but it takes about 1 week or 2 to get used to it(for some atleast).

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It will keep you safer for life .....so don't worry...you will get used to taking it,and Clopidogrel....Me 8 yrs of both and other Meds,Best of Luck to you,sure you will get others telling you the same! Sally

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Thank you Sally. That’s reassuring that you’ve been taking both for 8 years and are used to it all. I guess I plan/hope to be taking them for the next 30 (I’m 62), with a good life - a safer life, as you say - between now and then. :)

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Sally, can I ask you if you take an antacid. I too have been on clopidigrel a number of years but have just recently been told I should have been taking an antacid to protect my stomach from it. Wondering why I wasn't told this before and if its right or not.

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Hi Mcw22,

I’m on clopidogrel, I swapped because aspirin was upsetting my tummy but clopidogrel was too. I recently noticed if I take lanzoprozole at night I don’t need one in the morning.

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Hi MC,Yes I do,Emeprazole....but not every day,just if I am eating out or something that I know will cause indigestion.Also have Gaviscon handy!

Used to take E every day,but my French Drs tell me that it isn't really necessary...Who really knows they all have their own opinions.But I find the way I take it now works well.Good Luck,we know how our tums react to different foods trial and error.Sally

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Well done in taking the step! It’s daunting, I know. Hope you take to it and it benefits you well

Take care

Kerry :-)

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Daunting is the right word for it! I’m healthy and strong and have a high threshold for pain and discomfort - and of course am hoping this has little of either! Thank you for your support. I hope people on this forum know how incredibly helpful it is.

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Hi there, I am a nurse in the states and was diagnosed with ET in 2005. Never took Clopidogrel....just baby ASA which is standard care....started on Hydroxy but couldn't tolerate, went on Pegasys which is a natural substance that our body creates in smaller doses and have been in remission for 6 years....no medicine except baby aspirin.....I wish I could spread the word everywhere about Pegasys..........you don't have to have a lifetime of Hydroxy...........

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That is most interesting! I wonder why my haemo never mentioned Pegasys. I guess Hydroxyurea seems to be the “first line” of treatment for ET. I was taking low dose aspirin but had a mild TIA in May, and that’s when the haemo said I should start on Clopidogrel. I’ll be asking him about Pegasys when I see him in Sept.

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Hi, I was wondering how long you took the Pegasys before you went into remission?

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Honestly,you do learn to manage,I am 78now (think I am 1/2that age),!!!!!I thought with diagnosis my life was over....after a few months of panic and self misery,I started work again on advice of hospital phsyciatrist a great help by the way,I am proffesional sculptor and artist.....I admit that expos are hard now and very tiring but my actual artwork takes me away from the maladie.I have horses and dogs too,but they are the exercise we need,well too much really ,but hubby helps! The Fatigue is something we must learn to manage,hard to stop doing things you love to do,but several tumbles into supermarche chariots and legs giving up causing embarassment,I now pace myself ...well not always!!! As before I wish you the very best,the idea of Meds for life takes some strength of mind to digest. You will. Sally

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Thank you again Sally - you’re now my inspiration!

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Good ,I like to try and help newbies!!!XxS

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Hi Sally, you have helped many on here over tapas few years with your kind words of wisdom and support including me. So many heartfelt Thanks.

Chris

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Of course it ought read 'the past few years' though I'm sure your tapas is very good too. x

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Chris,Thank you for those kind words.You are my inspiration to keep going....you have been thru so much ,keeping your humour,will to survive,Your sister too,your wife and family.When I have my 'self pity'days I bring you to mind and push on.Sure there are many on this site feel the same.I do remember the horror of being diagnosed and how awful I felt,so I wish I could help 'newbies' more.Hard here,I don't think there is another M P N er in the whole of Aquitaine!! Drs are knowledgeable tho and very kind,but this site and'knowing'others like me ,esp the Jedi types!!!Very best to you ...as they say here 'Gros Bisous'!,yes we do have tapas with apero,big Spanish influence locally.Sally....suffering our incredible heat,which continues day and night,no cooling off as in U K evenings ....just sit in the pool,clad in big hat,water warm as a bath,just heated by the sun!

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I went through exactly the same thing back in 2007 when I was 44.... except I wouldn’t do it til lunchtime! Scary isn’t it?! So well done! I haven’t had any side effects and have been taking 2 a day for years. They just become tablets you take but I like the pink and blue ones better than the all white ones!!! 😀 good luck!

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Scary it is - or, I guess, was, since I just took my second. It’s encouraging to hear that you’ve done that for 11 years and all is well. My hope is that the one a day - pink and blue, like yours! - will do the job. And also that I will quit thinking about it quite so much. Thank you very much for your reply - helps immensely.

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I can assure you that you will stop thinking about it and it will just become something that you do (and lots of others do too!) 😀

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I take the hydrea...

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All the best and as others have said you will adjust and do fine - I have had HU for 12 years (since my mid 40's) and it's been fine - some adjustments initially a few side effects but your body adjusts and it levels out - you also get to know your "little box" that you can work within and its ok to then go with that and just go careful if you need to do extra in life outside that box - but that's more living with a MPN than the actual treatment as fatigue hits us MPNers. Many will say this to you but for HU the best thing is to keep well hydrated, a nice little water bottle with you all the time, little sips, let it become part of you and your routine, it helps so much as we do tend to dehydrate more than normal and this keeps you ahead of it and makes a huge difference. I have said often to new ones do think of your HU capsules as little friends looking after you and keeping you safe - because they are ensuring we are safe from stroke or heart attack - and it's a well respected and used treatment by the top consultants worldwide. All the best my friend, you will be fine.

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“You will be fine”. What lovely words, and thank you! I am lucky I guess in that I’m already a big water drinker, so I’m just upping that somewhat. Like you, others have mentioned fatigue from MPN; I was diagnosed a year and a half ago, but have not experienced any of that. Or does it happen when starting the meds maybe?

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All well and good if no fatigue - it's one of those things that can be part of an MPN but like all the possibles, it doesn't have to be so good news if you have not experienced it and probably the same re the treatment, some get tired on it others not - I know for years on it I worked full time in a very stressful job and could do it despite a MPN and HU!!

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That’s great to hear that you’ve been so well - living a full life and all that. Hopefully that will be the case for both of us for a good long time!

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So very well said and so right. Sally

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Hi WileyFrench, Well that was me six months ago “Shall I, Shan’t I?”

Now I swig them down without a second thought. Amlodopine, Clopidogrel, and Hydroxycarbamide. - Good luck to you !

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You’ve been there! That’s what I really like about this forum: real people in similar boats, and you’re all so darned helpful. You’ve no idea what that does for a person. Well, I guess you actually have every idea! Thanks so much.

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And the world kept turning! Night turned to day and all that. I do sometimes wonder if we couldn’t turn all that pre treatment angst into some kind of new environmentally friendly energy. We’d have enough to power a small town!

The reality is you may well not be on HU for life. Diagnoses change. Treatments change. Understanding and management of our disease will change. I’m excited to see what developments lie ahead.

As for Peg Interferon. It was always in the offing for me but ultimately (to my surprise) the Prof proposed HU as generally well tolerated. It really is a question of ‘choose your poison’. There are some (different but important) issues with Peg.

Anyhow, keep swallowing those capsules. And here’s hoping your numbers start behaving! All the best.

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Good point about harnessing that negative energy. I think I burned a week’s worth of calories on Tuesday with pre-treatment jitters!

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Well done, it is a bit like being told to jump off a high board at a swimming pool the first time you take the pills, it certainly does take courage to join the happy bathers in the pool below! My tum was a bit unsettled for the first 10 days, but got used to it quite well after that. I do hope it all goes splendidly well for you :-)

Best Wishes,

Peter

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Yup - hold your nose, and your breath, and in you go! Glad to hear your side effects weren’t bad. I keep checking my hair - ha ha. Although the info that came with the Hydroxyurea from B.C. Cancer Agency said that hair loss is very rare; I’m holding on to that!

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WELL DONE!!! You will be fine, and hopefully will get to the point where you don't even think about it and jus take it. Maz x

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Yes, that’s where I’d like to get to. Not wake up and think about any of it. I keep reminding myself that I’m the same person I was before I picked up the prescription. Thank you again for your encouragement, Maz.

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HI ... PLEASE LET ME KNOW HOW YOU MAKE OUT ......I WILL PROBABLY BE TAKING THEM IN ABOUT ONE MONTH ..... IT IS SCARY .... PLEASE LET ME KNOW HOW YOU MAKE OUT ...... TAKE THEM FOR AT LEAST ONE WEEK BEFORE YOU REPLY ..... THANKS AND HAVE A GOOD DAY

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Hi - it is scary. I’m definitely having a lot of emotional ups and downs about it right now. Can I ask why you think you’ll be taking HU soon? Diagnosis, platelet levels - or has something else happened recently?

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