Still High platelets on meds

[ggrana]

Has anyone been on hydroxyurea 2 pills a day and still have platelets high? I’ve been on it a year and half and my platelets are 999,000 ! Starting 3 pills today but seems too much. all the other numbers are in order with the two pills .

[jane13]

2 HU pills a day is a very low dose if that's of any reassurance?

[Ggrana3192 in reply to jane13]

Thanks Jane , I was hoping not to go higher because it did lower my numbers to 400’s in the beginning of it. But I’ll be taking more now . Have a Merry Christmas!

[Stevesmum42]

Hi ggrana

I have been on Hydrox for several years. But despite this my platters still went up, tried anagralide but it did not suit me with side effects. So Heamo put my dosage up again, now I am taking 3 Hydroxy daily that has bought my platelets down from 1200 . To 800 . Feeling so much better. I can't believe the difference. Still high but Calr so that does have higher platelets.

So maybe you need a tweak in dosage.

Best wishes Sandy

[Ggrana3192 in reply to Stevesmum42]

Thank you Sandy , I’ll be taking more. Have a Merry Christmas!

[Stevesmum42 in reply to Ggrana3192]

Happy Christmas to you too.x

[ccsial in reply to Stevesmum42]

I was on 2 500mg of hydera everyday for almost 15 years. I felt great all that time. My platelets stayed between 500 and 700. The last year my WBC has been going up a little. Last week I was told I transformed to MF. I'm 74 so very high risk now. He is keeping me on Hydrea and adding Jakafi.

[ggrana in reply to ccsial]

I’m so sorry to hear that . I hope the jakafi will help you. Thanks for your response . God bless you

[Chris3875 in reply to ggrana]

Hi ggrana - I've been on Hydroxyurea for nearly 2 years now - my platelets were over 2,000 and slowly, slowly they came down, but with a few ups as well. I am on 3 tablets for 5 days and 2 tablets for 2 days. My level dropped to 632 but then for no apparent reason jumped up to 998. Now, 2 weeks later I am back down to 668. I feel very well in myself with no obvious side effects except for some twinges in the joints and some tiredness during the day but that could be down to age as well as ET. All my other bloods are fine.

[ggrana in reply to Chris3875]

Thanks for your response Chris , have a Happy Healthier New Year. Such a crazy disorder we live with.

[Kim2795]

Hi ggrana

I'm having great results with pegasys. Dropped my platelets down quickly from 1270 to 529.

I've been on hu short term but results weren't as dramatic.

[conno61]

I'd be asking to try pegasys. I know it's not available in all areas (if you're in the UK) which I think is pathetic, but I'd certainly ask.

Good luck.

[Wyebird]

In order to keep mine in the low 400 I am on 17 hydroxi and 14 anagrelide a week. My haemoglobin ranges 103-108. I think that why I was put on anagrelide.

I remember reading a post by someone on 25 a week and she felt fine. Good luck

[Richinspirit]

Hello ggrana - hubby has been on 3 a day for 6 months in the past ....... gradually the platelet count dropped. This is a snapshot in time - stay with it........sometimes the count will be up and sometimes it will be down. It took him 8 years to stabilise - best wishes

[rmorritt]

I have been taking 3 a day and platelets are always over 500

[JackLina]

Maybe you could request a change. I was so ill on hydroxy and my platelet count didn't go down. I did quite a lot of research and was changed to Pegasys (45mcg per week) in June this year. Within three weeks my platelet count was within normal range and they still are. Now same dose every 10 days and platelets steady.

I have side-effects but I help myself by eating a low inflammatory diet and walking twice a day. Still trying to get going at the gym and yoga......... A work in progress!

[GardenGal3 in reply to JackLina]

Keeping active helps a lot, though I have never had ill effects from ET or Hydroxy.

[JackLina in reply to GardenGal3]

You are so lucky. Keep up the good spirit!

[SabatonRocks]

I went from 2 500mg to 3 500mg and my platelets are spot on now. I didn’t notice much of a difference in how I felt when I went from 2 to 3 a day. Hang in there!

[GardenGal3]

I'm on 3 HU pills 2x a week, two on the other 5 days. Platelet numbers vary from 400s to 700s and are fine for me (ET with CALR+).

[wgsutherland]

I have PMF and as of September last year I began taking 1500 mg HU on Monday Wednesday and Friday 1000mg on the other 4 days. I also take 9 mg of Warfarin daily. My Hg as of last Thursday was 106, my Platelets were 796 and my Bas are .1 I usually have blood tests every two weeks.

[honda2018]

Hello question what side effects have you experience with hyrdoxyurea?I'm scary to take take them after reading all the side effects

[ggrana in reply to honda2018]

I was nausea first month but now just tired more often. Good luck , hope you’ll feel better. It’s helped me a lot . I Use to have a lot bone pain and muscle cramps and that’s gone pretty much