Platelets at a million

[faith949]

Went to my mpn doctor on Monday platelets were at a million even while taking hydroxy 😟so she upped my dose to 4 times a day anyone have any side effects?

[francesb]

Hi, on that dose I tended to get some mouth ulcers and what I could only describe as a fuzzy head, I just felt a bit slow thinking. Otherwise tiredness but never know if that’s the drug or the illness. Good luck.

[faith949 in reply to francesb]

Omg yes I felt so out of it soon as I took the two pills together now I know why I’m so out of it all day and couldn’t get out of bed plus so nauseous

[Stevesmum42 in reply to faith949]

Hi. I take three Hydroxy a day. Always take mine in the evening at one dose. Have you been advised to take them individually during the day ?

[faith949 in reply to Stevesmum42]

No I was advised to take 2 at a time twice a day , I didn’t have any side effects until now . Did u have any side effects?

[Stevesmum42 in reply to faith949]

I would think that separating the dose is a better way. I have the usual side effects ie. Fatigue, some muzziness , occasional headache , but as we all say,how much is of this is down to the meds or the condition is difficult to know. I have ET . As Maz suggested get in touch with your nurse as she will be the best person for advice.

Regards Sandy.

[hunter5582]

At that level, some sign of HU toxicity would not.be surprising. HU is therapeutically weak, so some people need the high dosing. Not all can tolerate it and need other options. I would wonder about other treatment options and wherher they would be a better fit for you. Each person's needs are unique and there is no one med that is the right choice for all.

[Anag]

Hi faith, I take Anagrelid and my experience was to spread out the doses to keep weakness, etc. Down. I would safely estimate that I should be about 1.1 million right now without meds. With, I’m at 600 average. If necessary to add more meds, we are thinking ahead and would add a bit of Hydroxyurea. It is possible to take 2 different kinds. If your elevated dosage bothers you, discuss the option of adding 1 or 2 Anagrelid to that. They do this with many patients at all hospitals in Vienna. All the Best. Anag

[Cja1956]

I’ve been on hydroxy for 11 years. My dosage had been adjusted several times due to side effects. I was taking about 20 hydroxy/ week. Maybe after your platelets start coming down your Dr can reassess your situation and lower your dosage. I have ET Jak2 which progressed to PV 3 years ago. I now take 1000 mg hydroxy, 20 mg Jakafi, and baby aspirin every day. Remember to drink a lot of water every day. It seems to help with the side effects.