Hi all. Been taking hydroxy for nearly two weeks as newly diagnosed and have been looking around for drug info. I've been unable to find much on hydroxy for life - most info talks of side effects stopping when treatment is finished. What about those of us who never finish?
Am worried I will end up worse in 12 months than I am now. Know everyone is different but would be interested to hear how others have adapted to the situation.
Thanks for reading xx
I have been taking Hydroxycarbamide (various doses from 7 tablets a week to 12 a week depending on blood results) for 9 and a half years. I would far rather put up with some of the side effects than have a stroke or heart attack. I was told at the time of diagnosis that I am at a higher than average risk of having a thrombosis. There are times, however, especially when I do feel more tired than usual that the thought of taking medication for the rest of my life becomes rather overwhelming but these thoughts do not last long. Taking these tablets have become part of my daily routine and I do feel better for taking them.
I have E.T. JAK negative. What MPN do youhave?
Thank you so much for your reply. I guess the early days can be the most worrying until it becomes part of routine. At the moment the thought of taking a toxic substance (+asprin) daily is not a pleasant one. I am high risk ET JAK positive so as my son said 'between a rock and a hard place'. I guess six months from now I'll be wondering what I was making a fuss about!
You sound like a positive person which I do try to be and I am happy to know that your treatment has helped you and hope mine does too.
I have been taking Hydroxy for well over a year and I am definitely better much better than I was before I started taking it. I have ET Jak 2 positive diagnosed following a portal vein thrombosis in July 2012. I take it and aspirin and was put on it because although my counts though outside normal range were not that high I am a higher risk due to previous thrombosis.
My platelets are so well controlled now and my quality of life is so much better. Recentltly I was even told to decrease my dose. My main problem is fatigue. I take Hydroxy in eve / at night as haem advised and it means I sleep through worse of any tiredness caused by taking it. My skin is a bit dry but other than that no problems. I don't like taking it no one does, but do and have got used to it and it has been worth it and helps avoid risk of another thrombosis etc.
The fatigue is a pain, but sometimes not sure if that's caused by ET, Hydroxy, fact I have underactve thyroid, hard day at work or just age!
I like you was worried when I first started it but no real problems. If you read older post on this site you will see some people have been taking it for years and years and not got worse / had problems.
I do hope what you read on the forum will reassure you. I have been there and know how worrying it all is at the start. It all new to you so be kind to yourself and give your self chance to get into a routine
What MPD you have? Are you getting any specific side effects?
Liz C x
Dear Liz C
Thank you for your reassuring reply. I think that this forum is brilliant - where else is there that people will perfectly understand your worries and cconcerns and not brush them off as trivial.
In one way I am happy to know why I had been feeling so ill - now something is being done about it and I guess like you I will get used to lifetime treatment. After all what would happen without it!
I thing I did mean to say is do drink plenty of water when taking hydroxy. It is important to keep your fluid level up too. Do feel free to send me a PM if I can help in anyway. I too found this forum brilliant when first diagnosed and its continued to be a support. I have a great partner but nothing like talking to people going through same thing. Take Care xx
Hi Yogalover
I was on hydroxycarbamide for fourteen years the dose started quite low with half a tablet three times a week to one ever other, day, this slowly increased to nineteen a week over the years of taking it I also took an asprin every day too. I had ET.
Unfortunately eighteen months ago I was told I now have MF. So I no longer take hydroxycarbamide I am on ruxolitnib now.
I found taking the hydrox at night with a glass of water helped me as it did its magic while I was sleeping. I sometimes used to wake up with a bad headache but seeped to be all.
I have been a buddy to quite a few ET patients and they all seem to cope with not too many side effects.
Thank you for your encouraging reply and advice. Side effects haven't really become a problem as yet, just me worrying about what might happen.
I am sorry to hear that you now have MF. Best wishes.
Hi Yogalover
I`ve just read the five previous replies and would endorse everything said in them. I`ve too have been taking Hydroxycarbamide and aspirin for just over 2 years. I have ET and am Jak2 negative. I did not have any symptoms and the condition was picked up after a routine blood test. None of us want to take this drug but what choice do we have? I didn`t feel too well at first, one of those situations where the cure felt worse than the condition, but apart from the side affects of fatigue, dry skin etc., I feel fine and as previously mentioned, things could be a lot worse. Keep up with the Yoga, I`m off to my class tomorrow - it really does help, as does a little gentle exercise. Good Luck - Sue
Thanks Sue for replying to my question. It is really helpful to hear how others have managed to with with the various issues resulting from ET.
You are correct about yoga helping. Since my diagnosis I have done daily practice either at home or in class. I was at Yin yoga this morning - so restorative.
Hope you enjoy your class tomorrow.
Ruth
Hi Yoga lover ,
I have been on HU now hydroxy carbamide for 20 years in controls my ET well no real side effects except maybe some fatigue and a dry skin. It doesnt stop me drinking or eating and living a near normal life. However not everybody is as lucky as me.
all the best
Town Crier
ps my daughter got married saturday and I gave her away as town crier.
Hi
I have et and PV and have been on three hydroxy tablets a day plus aspirin for about 7 years now. I also have to have the occasional veenisection. However last year I ran my first half marathon for 27 years and am in training for another one at the moment. I don't seem to have any side effects, maybe a bit of tiredness now and again, but that could be advancing years and a busy lifestyle. The way I try to look at is that there are people far worse off than me or already in a box. Life's for living, be positive and keep your head up. There are odd down days, but battle through them😀
Wow half marathon! Makes me out of puff to run for the bus.
Yes a positive outlook is so important and despite the odd negative thought I always try to look on the bright side.
My yoga helps in so many ways as does being out in the fresh air walking the dog.
Good luck and best wishes.
Hi Yoga lover
I agree with your other replies. I've been taking Hydroxy for about 9 years now (4 capsules a day) the fatigue was a huge problem for me while I was working full time, and I strongly believe that it has slowed up my thinking a little too (I'm not quite on the ball as much as I was). Whether this is the ET, hydroxy or just plain ageing, I couldn't say. I do get very dry dehydrated skin so I would advise that you drink plenty, use moisturiser and be extra careful in the sun.
😉🍀
Hi Yoga Lover - with PV, I've been on Hydroxy now for four and a half years. To date (and whilst touching wood) no side-effects other than fatigue and dry skin - which may be due to age and the aspirin. Relevant blood readings/levels very quickly stabilised when first prescribed and am now on 9 x 500mg p/week. As you say we're all different but I seem to have adopted a policy of "anything & everything sensibly in moderation" and get on with life, only thinking about the PV the night before my next scheduled haemo visit.
As an aside, I have sounded out my haemo on a number of occasions (regrettably I don't usually get to see the same one twice) about the possibilities of being weaned off hydroxy in the hope that either a) the body somehow adjusts to what/how it produces the relevant blood levels or b) reducing further the intake of hydroxy; sadly it seems in their opinion(s) neither are an option or feasible..... Oh well, onwards and upwards 
God bless
Hi and thank you for your helpful reply. Like you everyone here has been really encouraging and positive.
I am hopeful that my platelet levels will respond to the hydroxy without increasing the dosage and that like you they will be stable and just another part of my busy life that I need to take care of.
Best wishes x
Is 500mg of hydroxy per day considered a low dose? Do you know?
Hi, I've been on Hydroxy for around 18 months now, I take 16 x 500mg per week, in the evenings, to lessen the fatigue. I also take aspirin, I have ET, JAK2 negative. I had a few side effects at the beginning but most have more or less faded away as my body has got used to the drug. My skin is very dry, despite blathering myself with moisturiser daily. (People admire my crocodile skin shoes - while I'm barefoot!) My consultant said it would be a life time of taking the drug, very daunting at first but I'm used to it now. It's the first few months of taking it that is the worst - mainly because you are looking for all the side effects on the leaflet! I'm still amazed I don't glow in the dark and haven't grown another head! The drug is better than a stroke (hopefully!) Best Wishes
Hi and thank you for your encouraging reply. As you say the first few months are where you expect all known side effects to take hold! I can see from all the lovely people on here that have answered my question that I am probably worrying unnecessarily. My head certainly feels better than it did before medication which has to be a plus!
As for moisturiser, I have enough varieties and quantities to keep me going for years 😃 x
Hi I have been on hydroxcarbamide for many years due to prior to taking it I had 3 blood clots to the liver so when the consultant suggested it it was a no brainer as far as it is concerned I am on it for life I have had few side attacks it makes me very tired or that could be the et that causes that but please keep taking things could be worse the only thing being a woman and before starting it I was told not to have a family but that out ways the facts without it I could have a clot that could be fatal so stick with it
Thank you for your encouraging reply. I spoke to my nurse clinician today because I am itching like mad. Piriton is the answer to my reaction to the hydroxycarbamide so not too happy about adding another med to those I already take. As you say I will hang in there at least until I next see the haematologist as the alternative isn't that great!
Sending you good wishes x
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