I am 65 female with JAK2 and ET diagnosis from Feb 2024In the past four months my platelets were in 800 to 900 range, and besides my age I have no other thrombosis risk factors or other health concerns. No other ET symptoms in the past 3 years, only elevated platelets.
I have been taking low dose aspirin since January and three weeks ago I started Hydroxy(HU) treatment, 500 mg daily.
I was quite reluctant to add Hydroxy, yet decided to follow my doctor's recommendations to do something to reduce the risk, especially due to a upcoming 2 months trip starting in July.
I got my blood work yesterday and the platelets are down to 657.
All other CBC parameters are in the norm.
My biggest concern is the 16% increase in the red cells width distribution RWD, which indicates quite an impact of HU on the RBC production. The RWD is 15, still in the norm, yet very close to the upper limit.
The liver enzymes and creatine are also slightly increased, and still in the normal range.
I will talk to my doctor tomorrow, and have a gut feeling he will want to increase the HU dose. He had mentioned the platelet target level of 200 to 300 which I assume will need quite aggressive treatment.
My dilemma is should I accept an increase, or stay with 500mg to see further impact on all above?
I am not sure how the healing impact and sade effects of HU unfold with time.
Any response or shared experience from will be greatly appreciated.
Thank you in advance for taking time to read my post and for any advice you may have.
Wishing you a wonderful day from sunny Calgary, now it is 9 am here .
Stay positive and healthy!
Written by
BrightNorka
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I was about same age when very reluctantly started hydroxicarbamide..tried lots of natural things first for a couple of years . When platelets went up to 1000 I felt it to risky not to take meds.Dr wanted me to take 500 dose a day but I said I wanted to start with every other day.
This was effective.
Still on same dose but platelets stubbornly stay around 580.
I'm happy with this and hospital agree it's OK as long as undef 600.
Discuss at appointment how hydroxicarbamide effects other bloods and risks / benefits of increasing .
Most Specialists don't aim for 200 /300 range ....
While on HU I discussed RWD and other "misc" blood counts. He said not to worry about these. This is my plot when starting HU. It went way high, low then normalized. See in next reply for another misc count that goes out of range on HU.
I agree with Mostew, setting a dose to get PLT that low is not common practice. Some Drs are fine up to 600, and my Dr is ok even a bit higher. I suggest you hold firm on your preferences, I paid heavily for not doing so. Our bodies usually let us know.
Here is another "misc" blood plot from my HU experience. My MCH was similar. It went into range after I switched to IFN. But the high readings on HU were of no worry to my MPN expert and in fact show that you're taking the med.
But most of us say less is more, more quality of life by limiting the dose to the least required for the essential treatment goal.
It is normal for RDW to increase when taking HU. This is not due to erythrocytosis. RDW = Red cell Width Distribution. It means that there is a wider disparity of the sizes of the red blood cells. This is caused by the macrocytosis that is a function of how HU works. Some providers actually use the increase in RDW as an indicator that the patient is taking the HU.
It is worth talking to the doctor about this to relieve your worry but it is nothing to worry about. What would be more important to talk to the hematologist about is you treatment goal for treating the thrombocytosis. There is no linear relationship between platelet levels and risk of thrombosis. There is no evidence that lowering the platelet levels to 200-300 has any clinical benefit. This is why many MPN Specialists do not use a numeric target, regarding the delta (degree of change) to be more important. When a numeric target is used, some use 600 as the target. silvermpncenter.weill.corne...
The adverse effects and risks of long-term use of HU are dose-dependant. It would be very reasonable for you to explore whether the inherent risks of a higher dose are justified by the putative benefits. Ask for documented studies that demonstrate a benefit to treating more aggressively to get platelet levels that low.
MPNs are rare disorders. Most doctors, including hematologists, have little experience with them. many are not up to date on the current thinking about treating ET and the other MPNs. Suggest seeking a second opinion from a MPN Specialist. Here is a list. mpnforum.com/tsr-the-list/
Meanwhile, here is some information you may find useful.
at the end of the day, the final decision is always yours. If you are not comfortable with taking a drug/ treatment, you can say no, or say you need more time to consider it.
You don’t say if it’s a haematologist or MPN specialist making this recommendation. If you haven’t seen a specialist , then maybe you could ask for this, to get a second opinion. I did this and she 100% agreed with me and discounted every thing my haematologist said.
I also have ET , diagnosed about 8yrs ago with platelets around 1450. They have bounced around btw 750-1650, mostly on the higher side. My haem wanted me to start HU so I did my own research and looked at many scientific papers to discover that high platelets are not associated with higher risk of clots.
“ pubmed” is a great place to look for the research papers, and they aren’t difficult to read or understand. Always look at the conflicts of interest at the bottom of the paper. I ignore papers that have any.
Also Drugs.com if you want to check out potential drug side effects- always look at the professional version so you have the same info as the doctors.
This is being fully informed, an essential part of giving your consent to a treatment. All doctors should respect this.
I still have high platelets but it doesn’t interfere with my life one bit. And I don’t take any meds other than ½ aspirin twice a week.
I have improved my diet- cutting out as much processed food as possible, play sport, travel and generally have fun. Oh, I also stopped seeing the fear mongering haematologist about 4 yrs ago. Again my choice, but that’s what it’s all about.
Don’t feel pressured into making a decision. Take your time to consider it carefully then decide what you want to do.
"My haem wanted me to start HU so I did my own research and looked at many scientific papers to discover that high platelets are not associated with higher risk of clots."\
This may be true.
However there have been many controlled studies that show that ET/PV patients on Hydrea greatly reduce their risk of trombotic events.
Thank you for your message, I am 66 and diagnosed with ET 6 yrs ago.
I too have Hydroxy, 500mgs x4 and 1000 x3 weekly.
I understand the important thing is to keep our platelet levels down. I am sure your doctor will advise, but generally I would think it better to have slightly more medication than to endure high levels of platelets. I do hope you keep well and please feel welcome to let me know how you get on.😀
Have not had my platelets checked in two weeks. They were 757,000 last time. I was supposed to be taking hydroxurea but quit around a month ago due to it made me so sick I couldn't stand up.( Doctor's don't know that). They wanted me to increase to two three times a week. I tried it but same results. So I guess I will tell them. I am 70 and still have to work to pay bills. I have been in the Painting business for 47 years . That could be the reason I developed this condition. Most people due well on hydroxurea with no side effects. I didn't have any for the first few weeks but then started having them. My platelets are probably sky high now due to how a bleeding spot on my earlobe took forever to stop bleeding. My research has shown me that can happen if they get to high. Like I said I would weigh it out because most people don't have adverse reactions to hydroxurea. Hope this helps.
You are correct to think that there is greater risk of hemorrhage the higher the platelets get. You are also correct that a significant bleeding event can cause reactive thrombocytosis. Sorry to hear you have personal experience with both of these issues.
While some people can tolerate HU, others cannot. I am one of the the latter. The other first-line treatment option for ET is Pegasys (peginterferon alpha 2a) . I have done much better on the IFNs. The IFNs have been more effective and much easier to tolerate than HU for me.
Given that you have experienced a significant bleeding event that is likely related to the thombocytosis, you may want to pursue other cytoreductive options. You may find that you will tolerate PEG or one of the other options better.
An update:My doctor recommended some HU dosage increase, and left the decision to me.
I decided to stay with 500 mg daily, mostly due to an adverse effect I was reluctant to mention.... diaria 🫢 three times daily every other day is too much to me.
As per my doctor it should settle down in the next two to three weeks, and then I will have another blood test and eventually will take more HU.
At least this is the plan.
Many thanks to anyone who has responded, especially with the RWD data. My doctor also said not to worry about that high number, and I put these thoughts aside for now.
The most burning question is would be there alternative treatment if I keep suffering with the HU side effects, or he will put me on inhibitor or interferon only if the HU does not work on my thrombocytes number.
Hello BrightNorka, Yes, there are other treatments. I was diagnosed a year ago, and started on HU. There were no problems for three weeks, and then it all went wrong. It did a good job on the platelet level, but the cost was too high.
The three most used options for ET are HU, interferon (various formulations) and anagrelide. Each has its benefits and its side effects, and everyone reacts differently. Individuals get different benefits and different side effects from each of the medications. This means that there is no clear treatment path, and it is so important for patient and doctor to have good communication and to discuss the options thoroughly. You are the expert on whether the side effects are tolerable, or whether they are too disruptive to your life.
After stopping HU, I had the summer to recover, and then negotiated the next treatment with my haematologist. I researched the options and read some medical review papers, and discussed them with him. He had to work quite hard to get the funding for interferon for me from the NHS, but he was successful. I started in March. It is too early to say whether it is effective, and whether the fatigue will subside given time.
There is a lot of research in progress, and there are also trials of new drugs that you might be eligible for, if that was something you were interested in. Each trial has specific entry criteria.
The information on the MPN Voice website is a good place to start reading...
Good luck, and I hope you find the best treatment for you.
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