Hi guys, start taking Hydrea a month ago, went for blood test, Platelets went up to 1566 when I started the hydrea they were 1321. I am quite worried I took 3 per week , just wondering if this has
happened to any one, any advise would be great, waiting for my haematologist to call
Thanks
Heather
Hi Georgevanier,
It appears hydroxycarbamide/hydrea has reduced your platelets. Perhaps not quite to the levels they should be, but the haematologist may discuss increasing your daily/weekly dosage.
I went up to 1665 in February this year, have been reduced to latest blood test at 440. But I take 3 on one day, 2 the next day. Roughly 17 a week.
It's a game of adjusting to see what suits. Took monthly blood tests at first to monitor me. Now checked every 2-4 months.
Fortunately so far no side effects for me on hydroxycarbamide. Other than original worry of this condition, and having to adjust to it.
I hope this helps
Good luck
Mark
Hi Mark,
I think my platelets numbers were reversed, I took 3 HU per week for a month after blood test it went up from 1321 to 1566 so hu was not effective, I guess my haemo will increase it.
So glad to hear you are doing well, I am feeling less anxious gives me hope.
Thanks so much, have a great day
Heather
My apologies, I did read it completely wrong .All the best with going forward
Mark
how about other blood profile such Hgb, HCT, WBC, etc...?
Maybe you should increase the dose of HU.
Talk to your doc
My HGB and HCT are normal but WBC is a bit high, I think I have no choice but to increase it , after talking to my Haemo on Monday, Thanks and take care.
Heather
Hi. Have a word with your hemo. There might be a reason for increase - HC might be increased. A lso, ask if you should take low dose aspirin as well. HC doses vary. I take 9 x 400g weekly. good luck
perhaps you could consider upping your dosage just a little bit and then seeing what your next platelet count is. When I started hydroxyurea I was very reluctant to take it and decided to take it every other day. Eventually that was too much for me so I moved to every third day. Over the two years that I was on it my platelets went up from over 1 million down to the 500,000s. I recently switched to Pegasys and I am experiencing some thing similar to you because my platelets are going up since the medication has not really taken hold yet. It takes a while to find the right dosage, but fortunately these medications can be adjusted up or down depending on what you and your hematologist think will work best. I wish you the very best in this journey.
Thanks for the encouraging words, was hoping it would have gone down instead, I guess I will have to discuss with my haemo for the increase dosage. Take care
Have a great day
Heather
I was over 1000 PLT when I started HU. It took a few months to get it to normal. You can see my 1st year on HU here, it had an immediate if not full instant effect. But I was on 2 pills per day (14/week) Your Dr should be discussing a higher dose to reverse that undesirable PLT trend. 3/week is a very low dose based on what we see here.
After the lowest point in my plot here, I went to just over one pill /day, so if you take the higher dose, it may not need to continue at that level once all is in range. (But my results of course don't predict others' here)
Dr should be ordering frequent CBCs as you watch these numbers.
I was so afraid of the side effects, so I started at a low dosage, so far no side effects, I will feel better trying a higher dosage. I am so grateful for this Forum. Thank you so much, take care.
Heather
georgevanierge do you have an MPN specialist?
Hey Georgevanier,
At 3 per week, you have the lowest dose I've heard of. Like you, I was also above a million to start. If you have not had any bad side effects and your appointment with oncologist is a way in the future, you could cautiously increase a bit on your own to one per day, but I strongly suggest that you contact your oncologist first to get approval. Frankly, I suspect you'll need more than 7 per week. Many of us have to go 14 per week and some take more. Right now, your high platelet level is more of a concern than taking a couple more HU per week. I assume you are also taking an anticoagulant at the moment. Otherwise, that high platelet level is very concerning.
I have phone appt. with my haemo on Monday, I think she will up the dosage to 1 per day, hopefully that works, I am quite anxious to see platelets lower, however still scared of side effects. Thank you so much for the advise, much appreciated.
Heather
you are on a tiny dose 3 a week when I started and my platelets were only in the 800 I was on 1 tablet a day. I went back 1 week later and it was increased to 2 a day. It takes time to get the dose right and you have to be closely monitored until then.
I will be increasing my dosage and monitor results monthly, hopefully I will find the right balance soon, with out any side effects, Thanks, Have a great day
Heather
is monthly your choice? I was monitored weekly / fortnightly for about 6 weeks. This allowed dosage to be increased more quickly. Good luck
My haemo suggested monthly, I will be talking to her tomorrow will ask for bi-weekly monitoring as this will speed up the process. Thanks so much, have a great day
Heather
good idea, they might ask the GP to do blood tests
It seems to vary a great deal with everyone as to finding the correct doseage and readdressing the right balance of meds. I hope you are able to get it sorted soon. It does raise anxiety levels though i know trying to adjust.
Hi Oscarsboy,
My anxiety level is really high right now, hopefully I can get this sorted out soon. Thanks ,Have a great day
Heather
You are on a very small dose and it may not be enough to reach your goal. Note that it is normal for platelets to cycle by as much as 100K in a single day. Tracking your response to cytoreduction requires watching the trend over time. Single lab results do not provide enough data to predict the trend. The normal protocol for Hydrea dose titration would be a CBC every two weeks to monitor response to treatment and regular CMPs to monitor kidney and liver function.
You do also have the choice to try a different medication if you find Hydrea is not suitable. Pegasys is considered the other first-line treatment option. It usually takes longer for PEG to work than HU, but some respond better to it.
mpnjournal.org/how-i-treat-...
legeforeningen.no/contentas...
Hopefully you have already consulted a MPN Specialist rather than a regular hematologist. Many hematologist have very little experience managing MPNs. MPN-expert consultation is invaluable. Here is a list just in case.
All the best as you move forward.
Hi Hunter,
Thanks for the links, I will be increasing my dosage, hopefully will not have side effects.
Sometime ago I read curricum could be used for inflammation . Do you know what type? I am asking as you always give great info. Thank you so much, take care
Heather
Hi georgevanier
The side effects do sound scary when read, and everyone's body is totally different, so I can only tell you of my personal experience. I'm currently on 12 tablets a week, slowly increased over a year, and up until now, apart from feeling a little more tired late afternoon, I don't suffer from any other side effect. Whether this will change in the future, I don't know, but I try to live one day at a time, and try not to worry.
All the very best x
Hi Snowsport,
You are so right about reading about side effects....quite scary. I will increase the dosage slowly, and take it one day at a time. Thanks so much, take care
Heather
Like the others have posted, you are probably on a very low dose. When I started HU about 18 months ago my platelets went from about 650 to about 350 in two weeks, I started on 2 per day (1000 mg). I am PV. We are all different in how we respond to medications and the course of our disease. Best to you.
Hi Meatloaf,
From the responses I get it seems my dosage is very low, so I will talk to my haemo about increasing to 1 per day , hope it works, Thanks
Heather
I can totally relate as I have been in the millions several times. Most was due to the the fact that we played with my dosage to see what was a good fit. But my platelets did go up before they went down. It may take a few weeks to find some consistency and you may need to add a pill in doing so just to speed up getting you down. I take 3 pills a day with little side effects. Hoping to taper down my dosage soon but trying to give my body consistency for a while. See what your hematologist says (if they don't call within 24 hours, keep calling). Take care 
Hi Zeppelin 11,
I will be speaking to my haemo on Monday, pretty sure she is going to up the dosage, will continue to monitor. Praying that there will be no side effects ,Thanks All the Best, have a great day.
Heather
Hi. When I started taking HU, my platelets were over 650. I take two a day every day started in March. My platelets are now 375, this is the lowest they have every been. My doctor's goal was to get them below 400. I have high blood pressure so I think he was afraid I would have a stroke. I'm so happy they are finally low. I'm not sure if this helps, but I have been careful of the food I eat and try to walk as much as possible. Just stay with what your doctor tells you to do and I believe you will also have good results.
Hi AndyKay,
Your numbers are amazing, I also try to be so careful with what I eat, bit of exercise as well. Praying numbers will get to a normal range. I am also on blood pressure meds. Thank you so much, All the best
Heather
Thank you. I am so proud too. I have tried to be so careful; changing my diet and walking more. Finally, the results are great. It was good hearing from you.
Thank you for replying. Right now everything is good. I pray yours will be better too.
To AndyKay: Is your BP well controlled now? That is esp important for us. I had some improvement after controlling blood counts but still require a low dose of BP med.
My platelets also increased after 3 months on Hydrea. Highest they had been in the 9 years since diagnosis. My haematologist increased my dosage by 1000mg to 4500mg weekly. Only then and after another 4 months did they come down but ever so slowly. Unfortunately I developed peripheral neuropathy in my legs and feet due to the Hydrea.My haematologist took me off it as it wasn't working at that dose and because of the PN she couldn't risk an increased dosage.
Hydroxyurea doesn't work for everyone but 3 pills a week is a pretty light dose.
Most patients are started on one 500mg pill daily.
I imagine your haematologist will try increasing the dosage to start with.
Best of luck. Hope it will start working soon.
Hi Phantasia,
After reading my test results on line, I went into a panic mode as my numbers increased, even at the low dose was hoping it would have decreased . I will be speaking to my haematologist on Monday, will have to increase my dosage, Hopefully it will start working soon. Still a bit scared of side effects, may I ask what meds you are on now? Thank you so much , Take care, and have a great day
Heather
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