Had a bit of a shock last week. My haemo. Rang to say that my platelets had gone up again (588) and has increased my meds to 6 50mg every day except one day a week then I have to just take one." She isn't worried but I am" Would appreciate your thoughts please. ThNks everyone. Mary
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Hi Mary,
What meds are you referring to? If it’s Hydroxy that comes in 500mg capsules. So I don’t see how you could take 650 mg?
Hi mary, yes like piggie I think you may be a little confused. Atb,tina🤗
Hi Mary, please try not to worry, your platelets are not that high, just a bit over top of normal and the Hydroxy dose is quite normal. many people on here have been on Hydroxy for many years with no problems. Good luck.
I take 500mg 3x a week and the rest of the time 500mg. My platelets have gone from 1689 to 850 now risen to 923.. So don't worry they haven't increased my dose they have left me on the same. I'm.not worried so don't worry yourself to much. Wish mine were low but getting there. Part of the journey.
I take 1,000mg each day and 1,500mg on a Saturday and Sunday. Only side effects I've spotted are that my head can now rotate a full 360 degrees and I can shoot lasers out of my eyeballs.
So every cloud...
Garden987 - all joking aside, it CAN be a little stressful and worrying and TBH 'the internet' doesn't help as I find quite often you only hear about the bad things (people only post when they are worried or struggling). Your platelets are without doubt elevated, but not a massive amount (all things being relative of course!) and assuming your haematologist is on the ball, you should listen to them when they say they are not worried. I laugh and joke about stuff, but I'd be lying if I said there was not plenty of times I wonder about the bad things. If you feel ok in yourself then give your mind a break. 
588 is not very high. Some fluctuation is normal from day to day. The are various reasons platelet levels can fluctuate. If you have had a significant bleed, have inflammation, or some form of tissue damage - that can trigger reactive thrombocytosis - the body's normal response to injury. I once asked my hemo-doc about fluctuations and he indicated that platelet levels could fluctuate by as mush as 100K from day to day.
The current research seems to show that there is not direct correlation for risk of thrombosis based purely on platelet levels below 1 million. The risk appears to be the same regardless of whether you are at 488 - 588 - 688. Risk determination is more complicated that platelet levels alone. Add to that - some people with thrombocytosis are more at risk for hemorrhage even at levels below 1 million (I am one of those).
Regarding your dose of HU, wondering if there was a typo as HU comes in 500mg caps.
Here are the dosing recommendations from ePocrates. Included PV and ET since you did not indicate which you have.
*polycythemia vera
[500-1500 mg PO qd]
Info: titrate to control Hct and platelet count
*thrombocythemia, essential
[15 mg/kg PO qd]
Info: titrate to control platelets and maintain WBC count
I am thinking some kind of typo re the dose as 6x500mg = 3000mg. That would be twice the max dose for PV, or the max dose for ET if you weigh 200kg/441lbs.
Regardless - it all relates to how well you tolerate the HU. Some tolerate it with relatively few adverse effects, others can't tolerate it at all. An increase in dose may or may not be a problem for you - based on how your body tolerates it.
Hope that helps. All the best to you.
Hi Mary
I and many others on this forum have been so concerned about the increase in your Hydroxycarbamide to 6 tablets a day, so I asked Prof Harrison about this, she has said:
It’s a huge increase and above the usual maximum she should check
I am putting this reply on all of your posts where you have mentioned your dose increase and where people have been advising you. Maz
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