Hi all. Can’t sleep tonight and thought of sharing my fears. I am terrified as everybody who starts medication. I am 67 years old and active. 15 years now was on aspirin only, with platelets around 550-700. Lately my haematocrit started to rise, now 51 with very low iron and ferritin. I have Jack 2+ either PV or ET it is not clear but probably PV. My haem suggested Hydro, 1 a day, and I feel that my life is at a turning point for the worse. (I have two doctors a professor who fortunately for me was very cautious and reluctant in giving me anything more than aspirin all these years but lives in another city and another one that I go to to have my prescriptions and tests here where I live.) So the new one told me yesterday that it was up to me to decide, that taking Hydroxyurea does not give me more protection for strokes or heart attacks and generally left it up to me to decide. I thought of following the advice of the professor and took the prescription.(he said I will find instructions inside the box!!) Reading carefully the comments here I don’t know how to start and what effects it will have on me. I can’t stand headaches if it causes that to me. Can I take pain killers along with it? Is it for life? Does it lead to further deterioration? I can’t sleep tonight with all these thoughts. Please help (Maz I will write to you) and sorry for my long message 😟
First time on Hydroxyurea : Hi all. Can’t sleep... - MPN Voice
First time on Hydroxyurea
Kelly, there is no need to apologise for your post. Understandably you are frightened and it is a difficult decision to make, and a significant one, after all these years. Nightime can be a time of great struggle. All I can say is that there many people here who take Hydro, including myself and very few of us have had any problems that have led to a deterioration. It would seem that once into our sixties, doctors like to see blood counts better controlled in order to try prevent problems. I take painkillers with Hydro for a problem unrelatedto MPN. Maz will give you more information, she is fantastic. But for me, taking Hydro was a turning point for the better! I You don't have to decide right this minute, and if you start them and you are not happy with how it is going, you can discuss this with your doctor.
Wishing you a sense of ease tonight and every night.
P.S. I found reading piggie50, a member here, very reassuring. Perhaps you will too.
Best wishes
Susieq
Thank you for answering! I have nobody to tell my fears. I read of nausea, tiredness etc what time do you take it? Do you take anything when travelling?
I am happy to be able to reply. Night always makes everything seem bleak and frightening. I am awake working on a project I need to finish. I take Hydro at night after some crackers and plenty of water. I have no nausea. When I started it first it mademe drowsy which is why I took it at night, it helpedme sleep through the night.. But that doesn't happen anymore. Last year I wason an 8 hour flight and then 5 hour coach journey and I didn't need anything for nausea, just the blood thinner to prevent clots. If you put in a search here for HYDROXY you will see a whole range of experiences, most of them good. I hope you can get some peace of mind and rest.
Susieq xxx
You are so welcome Kelly! Hope morning is good to you too. I am sure others will reply and you may feel reassured. Be good to yourself
Xxx
Hi kelly2,
I am 64 this year and have been taking hydroxy since I was 59. I honestly have had no side effects at all. I take 1 per day and 2 on sundays. I was reluctant to take it at first and lasted 8 years on just aspirin and venesection. I now only have a venesection about once per year and my itching after a shower has all but stopped. For me, it’s just like taking an aspirin each day and I think nothing of it. Yes, it is for life and my dose changes slightly depending on platelet counts. The thought of a stroke or thrombosis frightens me much more than taking this pill. I still go on holiday, take painkillers when required and eat and drink what I want. I live alone and know what it is like when you worry in the middle of the night and have no one to talk to. Please remember the drug leaflet gives all the reactions that could happen, many, many people get none of these. I had more trouble with aspirin, it caused a major stomach bleed for me and I was in hospital for 6 days. I now take Clopidogrel instead.
I have PV jac2 + with elevated platelets.
You have nothing to lose by trying it and if you find it doesn’t suit you there are other alternatives.
Very best wishes
Judy x
Thank you for your support. This is what I will do. Start and see what happens!
Good for you I was scared to at first I felt a bit tired then about two days later I had a lot of energy but got tired in the afternoon still do. Have been on Hydrea just over two months I do feel better in it I have less pain I think but still get a pain in my back that radiates through to my chest but I swear it’s worse if I’m upset I take two tablets a day and my platelets have gone down I take in the morning with breakfast I take one Asprin and blood pressure tablets at night good luck with it
Morning Kelly. Hope you are feeling a little bit better and more settled this morning. I have ET jak- diagnosed Sept 16. I have been on aspirin since then and just started Hydroxy last Monday. I also take Allopurinal to protect my kidneys. Im experimenting at the min to find what works for me in regard to best time to take my meds. I had been taking the Allopurinal in the morning with my usual aspirin but think it was giving me few issues, headache, nausea and bit light headed so I'm taking it now at around 9 in the evening with my Hydroxy and fingers crossed the last couple of days I have felt ok and slept fine during the night. My reason for taking the Hydroxy in the evening was just in case I felt a bit out of sorts with it i could sleep through it at night.
It is a worrying and scary time starting on treatment. I was supposed to start mine in Nov and put it off til now. There is always support here when you need it. Give yourself time to get your head around it but I've found its not as bad as I anticipated.
Take care
Mandy
Thank you Mandy! I have postponed it too once but now will start it and see what happens. I am thinking of taking the med. early at night so that I have time to drink water. Apart from itching after shower I have no other symptoms that is why I am reluctant to take the drug. Be well!
Hi, purely your choice. My heam said achohol is ok. I don’t drink lots, probably 2 glasses of wine per week if I feel like it, or in the summer a glass of cider or beer.
I was only told to avoid high iron meats like black pudding and liver.
Hi Kelly, please do get in touch, happy to help at any time. Maz
Hi Kelly, I have been taking hydroxycarbamide for six weeks now, also allopurinol, clopidogrel and amlodopine. I was really reluctant to start the medication , having always hated taking medication of any kind, but I finally decided, after several weeks, that I should after receiving lots of advice on this site. My platelets have dropped from 1200 to just over 600 so I’m heading in the right direction. I take the amlodopine first, then clopidogrel after breakfast, then allopurinol and hydroxycarbamide after lunch.
I haven’t had any significant side effects, touch wood, but will be increasing the hydroxycarbamide from 500gr daily to 1000gr on Saturday and Sunday so I’ll have to see how I get on. My haemo definitely thinks hydroxycarbamide protects me from strokes and blood clots.
I’m 71 and have the JAK2 gene. I’ve tried to change my diet, but it’s difficult when it’s so cold (excuses !, excuses !) but I do drink loads of water.!
Good luck n take care !
Thank you. See that you also take a pill to protect your stomach from the meds. I take OMEPRAZOL
The allopurinol is to protect me from getting gout because apparently, if your platelets fall too fast, gout is a possibility.
It is quiet natural to feel this way at first.
By reading everyone's experience it does give you insight into the way this may go for you.
As to the wild thought that this is the end for you.
I have good news, once your levels are under control it is a managed condition.
Try to take time out to find a safe space where you can find your own level of understanding.
Firstly, your team become your best friends.
Keep a diary of your symptoms, keep well hydrated this is important to flush the toxins out.
Secondly, find the best time for you to take your meds.
I am a diabetic so 2pm is the best time for me.
This medication is a mild level and it will reduce the production gradually, rather than in dramatic decreases.
Thirdly Maz is a fountain of knowledge and she May suggests a buddy this will help.
Good luck with this I can honestly say I am feeling much more calm I am feeling more positive and Saturday I am going on holiday for one week.
In friendship Annemarie nee Roger41 xxx
Hi Anne Marie, I think I will take my first pill also around 2pm, and possibly in someone’s presence as I am scared to take it at night in case something happens! Not a very courageous gal as you can see!😧
It's just a tablet.
You won't know it's working until the blood tests.
When you take ordinary tablets nothing happens does it , you will be ok.
It's not necessary to go overboard but I can understand that until you calm down you live again.
Six months later I see my hydra as a Mexican bean with a hat on and glowing in the dark, ha ha.
Take care, keep in touch and know that you are not a wimp you are you. It's ok to feel like this.
Dear Kelly,
I completely understand your anxiety about starting HU - or any new medication for that matter. It’s a scary step. I felt the same way. The potential side effects are scary but that doesn’t mean you’ll get them. I have PV, JAK-2 and was on aspirin and phlebotomies for a number of years ( 9, I think) and then I was prescribed HU and I was not happy.
The first week I took it I would lay out the pill and the aspirin and put on rubber gloves and wring my hands and fret for a while. And I lost a good deal of sleep. I still have concerns but I’ve calmed down considerably. For me, there were some side effects at first ( fatigue and some changes in my toenails) but once the dosage was lowered ( over the course of a month or two) my energy level came back up. HU brought my platelets down and got rid of the itching. I can live with funny-looking toenails.
Take one step at a time. Get as much information as you can and talk to your doctors. There is controversy about HU versus other meds and you’ll read about it. One year later I’m still learning and considering whether to try a different medication but I’m not rushing. BTW , I take my meds at night before bed and I always have a small snack first ( yogurt or something like that ) and I haven’t had any nausea.
As to pain meds, I’ve read that it’s best not to take aspirin together with either Ibuprofen or naproxen because they may interact. So when I need a pain killer I alternate the aspirin and the pain reliever by 12 hours. Another thing is that you need to drink A Lot of Water throughout the day. That’s to get rid of te toxins. So drink up. Like you, I ‘m active, too and HU hasn’t interfered with that. I haven’t gotten any headaches either- knock wood.
There is no real consensus among the doctors about the best course of treatment for the MPNs. Their goals ( to prevent strokes, etc) are the same but the treatments are not.
I’m trying to get as much information as possible - my hem only provides new information if I ask a very specific question so I’m on my own. Support groups are very helpful. The folks in this group are so very kind and have a wealth of information and experience. There’s another - similar one in the U.S. that I find very helpful as well.
Continue to take the very best care of yourself. We are all in your corner and are wishing you the very best. Lu
Thank you for the tip about painkillers and aspirin. What exactly do you mean by funny looking toe nails? And about the doctors not being very talkative that’s true. I usually write down my questions so that I don’t forget them. Otherwise they don’t bother to explain things.
Well Kelly where I live being retired they are looking for a new lighthouse.
So I thought I could sit on a pole and glow in the dark. Directing sea traffic.
Some times life needs lightness.
Kelly, Been taking 10x500mg hydox per week and 7x75mg aspirin per week plus blood pressure tablets coming up for 7 years no problems for me no side effects. I'm 64 and have PV I drink plenty of water and have a reasonably balanced diet I also have a of drink wine and beer. Don't worry too much. Regards Peter.
I take 10 Hydrox so, Mon, Tue, Wed I take 2 a day one in the morning about 9ish am then one about 10 pm. Then Thurs, Fri, Sat, Sun I take one about 9am, I take them after breakfast or snack, I don't run a strict regime sometimes it might later in the morning or even the afternoon if I forget. My life is now 95% normal. I see the consultant every 3 months and have a venesection if my haematocrit is too high. I have to 5 tablets including aspirin in the morning and 2 or 3 tablets in the evening. You get into routine and start to relax about it. Good luck you are welcome to ask me other questions, Cheers Peter.
Hi Kelly, how are you doing? Best wishes, Tinkerbell
Hi I am fine as always apart from the itching, thank you. I have not started it yet. I had another blood test, all counts about the same, my haematocrit even fell a bit. But I must follow my doctor’s advice he knows what he is doing. So I will start it shortly and may God be with me and all of us.
Good you obviously have complete trust in your doctor. Do let us know how you get on when you start it. Absolutely go along with your saying 'God be with me and all of us'. Most important of all! Always very best wishes, Tinkerbell
I trust him when he says “I fear a blood clot” now whilst he didn’t tell me that during the 15 years that I was diagnosed. I don’t trust the illness because we take the drug hoping to drop platelets and haematocrit and then they start dropping so low that one gets leukemia if I got it right.
Think, when platelets, etc. start to drop dramatically, the medics do then reduce the drugs to take that into account. I always find it odd that the drugs used each have a side effect, which is to lower platelets! It isn't a specific drug for the disorder....not sure if mentioned, but friend convinced having pomegranate juice every day (one without sugar) has brought down her platelets considerably after months. Worth a mention to you, at the risk of repeating it! Best wishes, as ever, Tinkerbell
I will certainly try it. Thank you
My problem is also high haematocrit. 49,8
Any tips for that too? 
Hello Kelly2!
Have read you concerns about Hydro and all the replies you received. That was a year ago and I was just wondering how you are doing? Are you still on Hydro? What are your feelings now?
I am exactly where you were a year ago and I am scared to death....I too feel like it is the end of my happy life.
Hope you are doing great and need some encouragement!! Thanks!!
Buggerbear
Hi, I took Hydro for about 3 months. It immediately (in 20 days) dropped my platelets from around 650 to 280. But it did nothing for the other counts or my haematocrit. At the same time after a bad cold and several drugs for it, my ears took a brownish colour and I sent him photos. So the doctor got me out of it and I started venesections. I had my second (after two months) yesterday and in a weeks time I will have a blood test to see where I am. The first one (300ml) dropped my haematocrit from 49 to 47. I have no idea about the future. I try to keep it out of my mind and go on with my life.
Be well
PS. My side effect was extreme tiredness all over my body. I had to lie in bed all afternoon and sometimes I would take a pain killer which helped relieve it. I am still on aspirin everyday.
Thank you Kelly! That's interesting and I certainly hope the venesections do the trick for you. I have had them now since 2015 and never had a problem or felt tired. I felt tired before I had the treatments because my numbers were so high. Only now, my doctor has put me on Hydro so tomorrow I get blood work and will see what my counts are.
I have learned so much from reading everyone's posts. It is very comforting to know that you are not in this world alone even though it is life changing. Thank you all!
Yes that is how I feel too! I hope you will respond well to the drug.
Hi Kelly. I just started hydroxyurea two days ago. I read the pamphlets and my mind started spinning. The first night I had some fairly significant nausea, lightheaded and headache but it made me so drowsy I just went to bed and slept through it. The second night was much much better. Some loss of appetite and fatigue but the fatigue can also be from the disease so hard to tell which is which.
Please keep in touch. I am here to journey through this with you.
Because of the side effects? So what are you doing now?
It made me very I’ll. I am 67 fit never taken medication only occasionally antibiotics. I have come off it. However many state they have no side effects so we are all made differently. Just on aspirin currently again as we explore next possibility. Left to me it would stay just aspirin but ET Jak2 positive will depend how these platelets rise. Changed my diet even stricter now. Lots fresh veg fish, no dairy rare glass of red & no pastry or junk food.
Feel really healthy with no symptoms that’s the problem 👍
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