Hi
I have taken Hydroxycarbamide for 16 years. I started very soon after being diagnosed with PV at age 51 and take 1000mgs per day. My blood results have remained very stable, only had one rise in my platelet levels when I had a chest infection about 5 years ago. I’ve haven’t had any side effects and it does the job for me so I stopped worrying about taking it.
Thank you for this update. I almost drove myself crazy worrying about this drug when I started it in late May. I’m 77 ET and on a pretty low dose 5 a week. Mostly people post horror stories so it’s great to read this. So far I’m fine and my anxiety has diminished. Many thanks again.
Hi, I too have been on HU for MF for a long time ( nearly 19 years) also on 1000 mg daily…tolerated fairly well, apart from extreme fatigue for many years, but now I have severe arthritic joint pain, and other more minor side effects..going to talk to my haematologist soon about whether I can reduce the dosage or switch to something else ( although not keen on the thought of new side effects !) …as I read two posts on here about joint pain disappearing after stopping HU. I don’t think I will be able to take Ruxolitinib, as a smoker and lactose intolerant..so not sure if there are other suitable alternatives. Good to hear that you have managed to tolerate it so well.
Hi, I have been on HU for about 18 months for PV, No side effects yet and all blood counts are within reference. Had the discussion about switching to INF recently with my MPN specialist and he recommended that I stay on HU. I will for now, I am 73. Best to you.
I’ve been taking hydroxyurea since 2008. I’ve had other issues crop up since then. For example, I now have a couple small lesions in my lungs and some minor heart issues. For the first time this year, I’m also getting mouth sores. Also, my spleen is just mildly enlarged, but I still lost about 25 pounds in the last 2 years. I’ve asked my doctor to change my medication, but she says there’s nothing else out there for me. I have post ET MF.
have you seen an MPN specialist for a consult?
I’ve been seeing an MPNspecialist since 2019. The truth is that I’m not sure whether it’s the hydroxyurea or my illness progressing because I’ve been on those pills on and off for 14 years. The CAT scan of my lungs this year said I have COPD but I’ve never smoked. I don’t see any reason why my lungs would be compromised except for the HU.
Second the advice from Mirror - if you haven't already you should definitely try and consult with an MPN specialist - there are other options out there but perhaps your doctor is unaware
look at my answer above, I’ve been seeing a specialist since 2019. My doctor knows of the medications, but I have always been a strange case, in that my platelets are high but my hemoglobin and red blood cells are low. I have tried Fedratinib and anagrelide in the past, I also have gotten EPO injections when my hemoglobin gets too low.
Thank you for the report, it is very encouraging for me to hear.
At age 64, I was recently diagnosed with PV and have been prescribed HU 500mg and a low dose aspirin daily to start. My doctor advised that it may take up to 3 months to determine the optimum dosage. I've been taking this medication for 8 days and have noticed a marked improvement in how I feel. Fatigue has reduced, my body overall just feels more "connected" (only word I can think of!!!) and no negative side effects.
I decided to take the HU after breakfast, at least for a while. If there's going to be negative side effects, I want to be aware of them as opposed to sleeping through them. Over time, if negative side effects show up, I may decide to take the HU before bedtime.
So far, so good. I'm hoping that I can be one of the many people on this site who report taking this medication for several years with mostly positive and minimal negative results.
I really appreciate this site and look forward to remaining active to both give and receive information and encouragement. Thanks to everyone who takes the time to share their experiences.
Hello again, I posted late December, 2022 about a PV with positive JAK2 diagnosis. I've been to doctor approximately 6 times since then (phlebotomy each visit), and Hydroxurea dosage increased from 500mg/day to 1000mg/day and finally past 3 weeks to 1500mg/day, along with a low-dose aspirin. I'm pleased to report that my HGB and HCT are now (as of 2 days ago) back in range and this last visit no phlebotomy. My next visit is scheduled for one month instead of 2 weeks. Needless to say, I'm feeling quite positive as I attained my short-term goal. My doctor has kept me on the 1500mg/day until my next visit 30 days from now. To be honest, though, although my blood is back in normal range, I now am a bit apprehensive about living the rest of my life (age 74 now) with this disease. Don't get me wrong, I'm extremely grateful to both my PCP and my specialist for guiding me to this point, but this short-term goal has been my entire focus. Now with this behind me, the long-term poses more questions that, I know, can only be answered over time and the uncertainty is causing some anxiety. My doctor has told me, several times, that I will not die from my condition, but I will die with it. Apparently, there is a very low percentage of people who progress into something more serious than MPN/PV.
PS - I don't know how to post a follow up and I thought seeing my initial post would be helpful to this one.
Congratulations that's excellent.
Thank you for the sharing your positive experience with Hydroxyurea . I was diagnosed with JAK2-ET three months ago and started HU 500/day. No side effects, blood counts all returned slowly to normal range. The most significant improvement is that my brain fog (spacey, lightheaded disconnected feeling) disappeared slowly and is now completely gone. I feel great. I get anxious reading a lot of the posts here and wondering if I should try to switch to interferon. So, I especially appreciate positive HU experience such as yours. Thank you.
Good to hear a positive report! I have been on hydroxy for PV for 6 years -dose has increased from 4500 per week, to 5500 but no major side effects.
Thank you so much for a positive post on hydroxycarbemide. I started the tablets this year and it’s wonderful to read your email. Many thanks Irene
This was a very thoughtful post, especially for anyone about to start treatment with hydrea.
I have been on hydrea for six years with absolutely no adverse effects. In all that time I have remained stable, and all my blood counts are within normal range (CHR). More importantly, combined with aspirin my risk of suffering a thrombotic event has been significantly reduced.
HI all, good to hear positive reports form long term Hydroxy use, ive been on it a few months now to treat PV, only noticeable effect is I got a cold sore which took way longer then normal to heal, I do feel pretty fine on it so far, im worried about hair loss as ive read some comments on it, but reading here it hasn't been mentioned which is a great thing!
Hi
I have quite thick hair anyway but haven’t lost any in all the years I’ve been taking it.
The Effects of long-term hydroxyurea
HYDROXY / IFN - long term effects 
Hydroxycarbamide 
Hydroxycarbamide
Hydroxycarbamide 
