So ive been taking Hydroxy for over 2 years now and my quality of life improved during that time. This past six months however, its taking a dive. Muscle pain and malaise have returned. I keep hearing that Hydroxy should not be taken long term by my specialist says it can?
Has anyone had to stop Hydroxy after a couple of years? What happened in your case?
I have not heard anything about how long you can take Hydroxycarbamide and I started taking it 2008. Who told you about the lenght of time it is recommended to take Hydroxycarbamide for?
Thanks for your reply- good to meet ones who have been on Hydroxyurea for a while.
Hi BloodZero, I too had a huge improvement in my quality of life once I started Hydroxycarbamide, which was in 2008, and I am still taking it as it does control my platelets and symptoms very well. Maz
Hi BloodZero, I have been taking Hydroxycarbamide since 2013 and I must say that it improved my life ten fold, platelets are spot on. I was told I would have to take for the rest of my life, so not sure where you heard this, but my feelings are as long as it works don't mess with it.Some people do not get on with it, but there are other alternatives out there, so speak with your Haematologist to get some advice.
Thanks for your reply- good to meet ones who have been on Hydroxyurea for a while.
Glad to hear someone else is having a similar to my own. I was not sure what is happening, but I've been taking Hydroyurea for Essential Thromboycytosis since September 2019. At first my symptoms improved immensely although I maintained a fatigue which came about 4 pm, like I'd just loose steam. But overall felt better and it keeps my platelets in the zone. But in the past 5 months I've had much more fatigue, sometimes waking like I am tired to the bone. And my memory along with clear thinking has diminished. It has been upsetting. I also was told I'll need to be on this for life. i meet with the hematologist in a month and hope she can explain what is happening. I'll be curious to hear what you might discover about this reaction.
I will also need to be on Hydroxy for the rest of my life as the alternatives are not a good fit for me. Being a toxic drug, im wondering if at times my body is having a hard time clearing it out and thus making me feel ill. Admittedly, i could be eating better at times. Eating more fruit and veg may help my body do what it needs to do. I have some other ideas what may be happening too. As far as my Haemotologist is concerned, as long as im functioning, it all good. I would really like to find a specialist in my city that has deeper insight. But have not as yet found one.
Im due to see Haematologist again in a few weeks and will talk about it again. And i will update.
I hope that like others who responded you will be one able to tolerate HU and benefit from it. Unfortunately not all of us can. I have been on HU for three one-year periods. Most recently from April 2018 - April 2019. The first two times were OK. This last time I it compromised my intestinal endothelium (constipation), caused stomatitis, thrush, and leukoplakia. The problems continued even at very low doses. The MPN Specialist took me off once I consulted with one. He was vey clear that it was not in my best interests to continue. Once I discontinued the HU, the issues mostly went away.
The issue with long-term Hu use is that there is an increased risk of leukemic progression when used for more than 10 years. Do bear in mind that HU is a toxic medication and some people are not able to tolerate the cumulative effects. It is always a matter of balancing the benefits with the risks/adverse effects. It is different for each of us.
I have been on a phlebotomy-only protocol since April 2019. Now that is causing problems too as the long-term iron deficiency also has adverse effects, including increasing the thrombocytosis by about 200K. I will be starting Pegasys soon and hope for a better outcome, controlling both the thrombocytosis and erythrocytosis without so many side effects. We will see how it goes.
Hope you get it all sorted out soon. All the best.
Thanks for sharing your experience with Hydroxyurea. I agree with you about balancing the benefit vs side effects. Something ill keep in mind.
Hi Hunter, hope you get on well with Pegasys!
I had a bad skin reaction to Hydroxy - and have had go on to Anagrelide instead this was some time ago (2 yrs ?) thank goodness I am okay with Anagrelide! & Aspirin!Good Luck be well.
Ratton 726
Hi Blood: It was discontinued in my case was because my platelets dropped and I developed ulcers on my shoulders and buttocks.
Cheers
Uz
Hi. I was taken off Hydroxicarbomide as my fatigue was terrible. I could not function. Also my white and red cells were decreasing aswell as platelets. Now on anagralide it is better forme. I still have bad days but not everyday like Hydroxicarbomide.
They tried diff doses but still the same affect. The white cells were getting too low so had to come off.
I’ve been taking Hydroxycarbamide for 15 years now, I suppose it’s keeping me alive but I would like a break and find something else.
Wow that is a long time ! So is it that you feel adverse effects that you wan to stop ? And if you don’t mind me asking how old were you when you started ? I’m 62 and just started taking it February 1 , 2021 . Still looking for a dose that will bring down my platelets into range ( target around 500) I’m CALR 1 . Taking HU 500/1000 alternate days for now . Started at 1.4 million and am at 950 now .
I was 61, when starting Hydroxycarbamide (I’m 76 now). I have had ET since I was 47 in 1992 (29 years ago. At the start I was given myself interferon injections for about 8 years and then a platelets settled and I had aspirin only until I started Hydroxycarbamide in 2006. I was taken off Hydroxy for a couple of months in 2018 and was put on an Anagrelide causing platelets to raise to 900 and I suffered a heart attack and had two stents fitted!! So now back on Hydroxycarbamide!! I’m on lots of other medication as well for other ailments and feel now that I’ve slowed down with aches and pains etc but I suppose I am thankful for the care I have been having.
Thanks Townie for your reply. 15 years is quite some time. May i ask: what the Hydroxy is doing that you feel you want a break from it?
I am lethargic and utterly worn out most of the time and my skin on arms and legs getting small blood spots. Also aches and pains in back, hips and knees.
Hi Blood Zero,
I only took HU for 5 weeks, first month was okay though I worried about being toxic to my septic field as I live alone. Living alone means that there is only me making deposits to the septic system. I also worried about my dogs licking my fingers due to presence of the drug in sweat.
Thing is I was diagnosed due to a blood test in 2020 with next to no symptoms and very good quality of life. Platelets were close to 1K and I am over 60 with controlled high bp. so my first general haematologist was keen to get me on cytoreductive therapy. And I had a transient ischemic event to one retina.
After about a month I got crushing fatigue, nausea, and noticed that an ulcer on the tip of my tongue wouldn't heal. I also developed a suspicious spot on my ankle and wondered about vasculitis. I had more than my share of sun exposure before getting smart in my 30s and a significant family history of skin cancers. So I stopped.
My platelets had responded well, but I understand that number of platelets is not the only factor that goes into having thrombotic events.
I have since started on Pegasys and tolerating this fairly well though some issues with very swollen face and eyes when my dose was moved up from 45Ug per week to 67.5Ug and then my liver enzymes got elevated over normal so I reduced it. Call me a bad patient but there it is, will see what happens to my platelets and liver enzymes in 2 weeks.
After I stopped HU my platelets stayed low for over a month then started to slowly creep up. Individuals vary and this is a very variable disorder so your platelets might respond differently but testing will sort that out.
There are options.
Take care
I switched from hydroxyurea to pegylated interferon after about two years. Perhaps the worst side effects, greatly improved since the switch, were significant arthritis in my hips and knees, delicate skin that didn't heal and thin and increasingly deformed finger and toe nails. Over the months following the switch, these symptoms slowly reduced and almost back to normal now. Before the switch, I needed venisection every few months but have not needed one for well over a year now. I wouldn't go back, despite having to pay for the interferon.
Hi BloodZero, I have recently asked to come off Hydroxycarbonide (3 weeks ago). The thought of taking HU for the rest of my life just didn’t sit well with me. The side effects of HU were extreme fatigue, shortness of breath, skin problems, horrible itching, very dry and rough skin, blotchyness on my face, also intolerance to some foods. My haematologist has repeatedly said that she didn’t believe my symptoms were due to HU. She reluctantly agreed to let me come off it. I will say one positive for HU and that has been no headaches! I have suffered with migraines most of my adult life but since starting HU in Nov. 2019 I didn’t have a problem. Since stopping HU, however, I’ve had a continual headache for the past 2 weeks. I have a follow up appointment towards the end of a June and it will be interesting to see how my platelets are doing then. I have ET triple negative. I’m still taking the aspirin. I still have a problem with fatigue which I think must just be due to the condition. I’m 68 and also have hypertension and have just recently been diagnosed with Diabetes 2. (Due to extreme fatigue I have found exercising regularly, difficult. Also have had Covid so it’s been a difficult year for me. ). My Haematologist has said that the side effects for alternative meds would probably be just as difficult for me. Initially my platelets were 1.3 mil. They have come down to around 500. They dropped significantly (down to 170) when I did some energy healing at the very beginning. However, due to Covid I didn’t continue with the energy healing. Going to start that up again this weekend. I’m looking into integrative solutions, diet, supplements, exercise etc to try and stay on top of this disease. Also just getting out in nature, walking and in my garden......gardening is lots of exercise! As you’ve said we are all individuals and finding out what works best for you is in your hands. I think we have to do our own research, experiment and find out what works for you. All the very best to you and I hope you can find solutions and peace of mind.
Thanks for your reply. That reminds me, i used to spend alot of time in nature. But during 2020 developed indoor habits. Now thats its ok for me to go outdoors, im reluctant. Now i have a whole lot of bad habits to undo.🤔So now that you are off Hydroxy you are only taking the Aspirin. Is that right?
Yes, I came off as soon as she gave me the ok. I was taking 13 tabs a week and at my regular phone appointment she wanted to increase the dose. That’s when I said I didn’t want to increase it but wanted to come off it entirely. She then said “We’d better have a face to face consul.” Will be a face to face in June as well. I think getting out in nature is so important for our overall health. I have a horse who I haven’t been able to ride as I just haven’t had the energy but I do go up and see him a couple times a week and that is pure medicine for me.
Hi - I agree with Superwoman-only been on Hydroxy 5 months but all ok so far. Speak to your doc for a change in meds. Good luck. Annula
I’ve been taking hydroxy since 2008. At first it made me tired and nauseous but my body adjusted and it’s fine now. I have tried other medications along the way, but this is the one I have stuck with. Good luck with everything.
Thanks for your reply CJ. Good to hears it working out for you. Would you say it took a couple of years for your body to get used to?
There is no easy answer to your question. As you can see from the many replies hydroxy affects people in different ways. I feel at this point, it may have stopped working as far as controlling my platelet count. But my doctor, who is an mpn specialist, wants me to continue to take it. I have experienced some pain in my extremities, mostly in my arms, in the past few years, but I’m not sure whether that’s because of the disease or the medication. I’ve always experienced fatigue but that too has become worse over the years as my disease progressed from ET to MF. So again, everyone’s case is a little bit different. That’s why this site is helpful because you can get many different opinions and then speak to your doctor about it.
As i have already spoken to my Dr about it a few months back and she thinks Hydroxy is a good fit for various reasons and reading all other comments i feel the best course for me is to just learn to deal with the fatigue. Learn to use my mind in a way to get things done even when exhausted or depressed. And to pursue other non-medicinal ways to support my body while on Hydroxy.
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