A Happy New Year to everyone. I have ET and am 70. I started hydroxycarbemide tablets in March of last year and had them increased to 9 a week after a couple of months. In August they were amazingly down to 327 . Then in November up to 415 and a month later a blood test for my cholesterol level showed another increase to 502. I go back in 5 weeks to see my haematologist who says he looks at the trend before increasing the dosage. Over how long will the trend be reviewed please? I’m very well and my cholesterol is well controlled with statins. I’m very reluctant to take more hydroxycarbemide unless necessary. Please let me know your experience re increase in dosage.
Kind regards Irene
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Na56
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Sounds like you have a sensible hematologist. If platelets continue to rise and he recommends increase in meds ,discuss reasons to and your concerns. Weigh up risks and Benefits .
As to how long it will be under review I would imagine that's an individual assessment based on whole picture.
I was recommended to increase hydroxicarbamide a few months ago from every other day to every day. I suggested waiting as it was felt platelets not decreasing quickly enough but I wasn't in a hurry. Felt OK
Platelets now down to level hospital happy with *at least the consultant I spoke to still taking every other day.
Thank you for your reply. I will discuss further when I see the haematologist. Can I ask you if your platelets decreased at each blood test or did you see a fluctuation like I have. Kind regards Irene
I would think at 502 it's safe to wait and see. As long as no concerning symptoms. Obviously as long as its what feels best option. And no worrying symptoms
It’s normal for platelets to fluctuate. Mine tended to be in the 700s and 800s for a long time and I was taking 14 hydroxy a week. I have post Et MF and in the last four months they’ve dropped to 283 which is actually worrisome, because in my case, it could be a sign of progression. My hematologist liked me in the 500s but I could never get there. She actually reduced my hydroxyurea this week because my other numbers are dropping as well, like my hemoglobin. It’s a tricky disease and there’s no one-size-fits-all. It’s a good thing. Hematologist is watching your numbers. Good luck to you.
Thank you for your reply. My haematologist said that platelets shouldn’t fluctuate by more than 50 but I’ve read on this site that larger fluctuations are accepted by other haematologists. My best wishes to you Irene
It is normal for platelets to fluctuate by as much as 100K in a single day based on what is going on in the body. It is always the trend over time that matters.
It would be worth discussing your treatment goal with a MPN Specialist. Many no longer use PLT<450 as the goal. The thinking is that there is no linear relationship to the lower platelet numbers and risk of thrombosis. It is understood that higher platelet numbers are related to a higher risk of hemorrhage, however. When a number is used, some MPN experts now use 600K as the goal. silvermpncenter.weill.corne...
Some MPN experts now treat each patient individually in assessing risk and setting goals. There is thinking that it is actually the delta (degree of change) that may matter more in regards to platelet levels. Suggest you may want to have a conversation about your individualized goal, why that should be the goal, and what level of risk you are willing to take to achieve that goal. If you are concerned about taking a higher dose of HU, then you could also discuss your other treatment options (e.g., Pegasys).
You also have the option to seek a second opinion from a MPN Specialist if you have concerns. This is a very reasonable thing to do whenever there is a significant question about any treatment choice.
Thank you for your reply. I wonder what degree in change of number of platelets is acceptable? I will discuss further with my haematologist as you suggested. Kind regards Irene
Hi there, I have just read your post and everyone's replies which are very interesting. My experience, so far is, one capsule every day, which quickly changed to two, then three, so I take take 21 hydroxycarbonide a week to keep the numbers in the 400s. A recent experiment of not taking any, resulted in a rapid increase of numbers of platelets. In just four weeks they had gone up to the 800s. So, back on three pills a day and platelets back in the 400s. So you can see we are all different. Hope this helps 🤗
Thank you Brodie. Can I ask if you have had any side effects from the tablets. My hair is thinning on 9 tablets per week and I’m concerned what will happen if the dose is increased. Kind regards Irene
My hair is okay, but I have other problems which were why I had a four week break from taking it, but as I said, the platelets took off speedily, so had to go back on it at three a day and now my mouth is sore to add to the list 😂 but hopefully that will ease soon.
Sounds like HU is working for you. I’m on 2 500mg/day per week with great results and without any problems. But, like you, am very apprehensive about medication yet more concerned about the potential issues that can happen with a high platelet count.
I’ve been on this regimen for 7 weeks and my count went down from 661 to 380 as of last CBC on Thursday past. I’m happy with the progress and feel my energy returning to previous levels.
That being said, I’m planning on trying a lesser dose starting in a couple of months with close oversight by my oncologist.
It’s your well being and your decision of course. Be sure to work closely with your doctor as you find the right dose. I track my “feelings” every day to monitor impact of HU, diet, and exercise.
I’m a 74 year old male in good heath otherwise. All the best to you on your journey. Hope this info is helpful.
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