I have been on Hydroxyurea for about 9 months and things seemed great until recently. Good news: platelets dropped from 1M to 350K. Bad news: my red and white cells have dipped below normal for the last two tests. I have a scheduled appointment next month. Should I reach out sooner? Is this normal on this medication? Any thoughts?
Thank you
My red and white counts are also “below normal” since starting HU 18 months ago. Apparently the HU not only lowers platelets but also suppresses the other cells. My haemo says that’s just fine, that the regular blood tests are to keep an eye on things and if the reds go too low then he might look at an iron supplement. I’ve read similar things about blood levels from others on this forum too. So, long story short, I don’t think you should worry, it seems to be very normal on this med - but definitely ask your doc about it at your next appointment. And on the up side - fabulous response from your platelets!
Thank you
This is why I am hesitant going on this drug!! It really scares me. My platelets aren't as high as yours were. I wish there was a drug that didnt touch the other cells.
I agree. I will say that my experience has been mostly positive. I improved my diet and exercise when I started. I think that helped with fatigue. I take 2 pills at night and it actually helps with sleep. I wish I didn’t need meds but I’m glad they have them. Hopefully someday something better comes out.
My red and white cells also dipped. I had to come off HU as it was getting were if I picked up an infection it would be dangerous. They even tried HU on a lower dose same thing happened. No on Anagralide it does not affect other cells
How is Anagralide working for you?
How low were your white and red cells ? Mine have fallen too ... just curious. Thank you Arty16
When on Hydroxi my red cells went a wee bit low but it did not alarm my.consultant.
The white cells went to a dangerous low level they advised me to not catch anything for at least 2 weeks . If I did I was to call them immediately as it would prob mean hospital.
I was off all meds for 4 weeks till they normalised then put on anagralide. Was there on wed platelets now normal levels I take 12 anagralude a week.
It has taken a while to get to that point.
Hope that helps
Thank you for your reply. My white cells are at 3 and my doc said there was risk for infection below 3 so I am still ok . My reds are at 3.7 so that is below but he wasn’t concerned. I think I worry way too much . Good luck to you.
As WileyFrench says, the hydroxy doesn't just affect the platelets. Over the first year or so when I started hydrox the haem was constantly adjusting the dose to get the right balance. It is low neutrophils which affect me from time to time, but these are brought up again by reducing the hydroxy. Although my blood levels are not constant after 4 years of hydroxy, they are much more balanced and the big benefit I enjoy is that I seem to have minimal other side effects. Good luck!
Hello
Hydroxy doesn't know the difference between the types of cells in our blood.
It kills them all! So long as you've got your platelets under control that's the may thing for now. Our condition is always going to deteriorate so they will try lots of different drugs to control things over the years. Hang on in there!
HU does affect all blood cell lines. It is a cytostatic medication that interferes with DNA activity throughout the body, including hemopoietic stem cells. These cells are the precursors for all types of blood cells. Reduction in all blood cell lines is to be expected. If your leukocytes (while blood cells) drop too low, then your immune system can be significantly compromised. There are issues that can result from erythrocytes (red blood cells) dropping too low as well. It is often a balancing act when weighing the benefits and adverse effects of chemotherapy. If you are not having any symptoms, then likely you are OK for now. Certainly is something to follow up with your doc about.
Hello, I am triple negative. My doc advised me to take asprin initially. Now with the latest report my platelets have almost touched 1 M. He has advised to start on hydroxyurea. I am really worried. Feeling little depressed too. Is life normal with these medicines or health deteriorates with these medication. I have lot of family responsibility. Will I be able to lead a normal life? Need the support of you guys to keep me motivated.
Hi, I was diagnosed with PV nearly 6 years ago, aged 52. For the first 9 months I was treated with aspirin and venesections. Although venesection was largely effective in reducing the thickness of my blood, it was causing my platelet count to rise and making me tired, so I started Hydroxycarbamide. With regular blood tests my clinic (in Sheffield UK) has kept me informed of all the changes in my cell counts and we've tweaked the Hydroxy dose on occasion. I'm now quite stable on 1000mg (2 tablets) 6 days a week, and 1500mg (3 tablets) on the 7th day. I have a blood test every 4 months to confirm all ok. I try to eat and drink sensibly, keep hydrated and exercise. I work full time in a quite physically demanding job. I'm leading a normal life and loving it! I agree that I was apprehensive at first and wondered what the future had in store for me, but so far, with the support of my wife and the NHS, everything is great. I know we're all different but I hope that some of this is relevant to you and that you can take some encouragement from it. Good luck.
Thanks for your reply
Many people take HU with no problems. However, as with many serious long term problems, depression will often creep in. Do not feel afraid to talk to your doc about it.
Hi, Please don't let this worry you too much, I know it's scary but it is manageable, there are far worse things we could have. I have been taking Hydroxy for over 20 years! The dose has had to be gradually increased and my platelets are now pretty stable at around 500 - 600. I have had 3 bone marrow biopsies over the years to check what's going on and I am also on low dose aspirin.
Yes I get tired and yes sometimes I need to be kind to myself and just have a day of doing absolutely nothing and yes sometimes I get a bug that's hard to shake off. BUT I am still loving life and am so so grateful for the fantastic medical knowledge and support I have benefitted from. Things are changing all the time and who knows what improvements are yet to come.
Hope this helps a bit xx
20 years is a long time. I am glad to see your reply. It has given me some confidence. Thanks for your reply.
Thank you. Things were going so well that this negative change really bothers me. I currently take 2 500mg 5 times per week. A doctor at Dana Farber in Boston specializes in MPNs told me that this will be a process but manageable. I just need to remember that I guess.
Hi mjl1977, I was diagnosed last Sept, ET jak2 positive, put on hydroxy, I also hate taking this, I find I catch more colds, and my platelets are 588 but been at 544, I should take 2 x 500mg every day, but I tell them when I visit, I'm quite happy and do not want to load my body with hydroxy, and I. Take 1 a day and 2 on a sat when I'm not playing tennis or anything physical. I monitor my red and white blood cells each time I visit the hospital, I have aspirin each morning and feel far better for lowering my dose.
My ET was found just from a routine blood test platelets 940. They were 518 14 years ago and nothing was said to me then. Confusing really, let's all pray a magic pill will rid us of this faulty gene a s a p. Good luck
Same here. Red cells below normal and white right on edge of low normal.
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