Hydroxy quickly failing to control platelets.

[katiewalsh]

I'm new to Hydroxy and have a question. After about 8 weeks on Hydroxy my platelets are climbing again. It took around 4 weeks on Hydroxy for the levels to become acceptable. They were on a great downward trend. But now they're climbing. For the past 3 weeks they've climbed every week going up over 100,000 points in just three weeks. I was on 500mg 5/week so doc is increasing it. I'm worried that this pattern will continue: a higher dose will work for a few weeks then stop working. Does anyone have experience with this? I'd appreciate any info you can provide. Thanks! Katie

[jane13]

hiya,

i have had a similar experience: my bone marrow got more active so i had to take more hydroxy to suppress it. I went up to 14 tablets a week. But then it decided to calm down a bit and i am back down to 6 tablets a week. This happened over a period of 4/5 years. I took the hydroxy because I understand that if you let your bone marrow roar away at top speed it may burn itself out (myelofibrosis). According to my consultant people can have quite different patterns of activity like this. Good luck. Jane

[katiewalsh in reply to jane13]

Thanks Jane!

[lizzziep]

I have ET, I've been on hydroxy for over 2 years. My platelets were well over 1000, they went up and down at first, I am now on 16 x 500 mg per week, my platelets were hovering around 380 but have now crept up slightly to 465 so if they are up again next time they will investigate/alter my dosage. It's a scary drug but a good one for ET! There are people on this forum who have been on it for years.

Best Wishes

Lizzie

[katiewalsh in reply to lizzziep]

Thanks. That's reassuring.

[lizzziep in reply to katiewalsh]

It's very scary when you first start on HU, especially if you read the leaflet in the box! I also investigated it on the internet, and believed all I read. Which scared the you know what out of me!! Then I found this forum and calmed down somewhat! Give it a chance to work its magic, it's not so bad, I got side effects at first, but they mostly faded away after my body got used to it.

Best Wishes

Lizzie

[beetle]

Hi Katiewalsh. I had a similar experience when I started taking Hydroxy over 20 years ago. My platelets were not under control by 5 months so I was switched to Busulphan. That is a drug rarely used nowadays because of side effects and when my consultant retired the next one put me straight back on HU. That kept me going for another 15+ years, albeit in increasing doses. About 4 years ago I switched to ruxolitinib after progressing to MF. Over the years it has benn a juggling act to keep the platelets down without depressing other counts too much and I believe that is quite a common story. I was on 4x 500g per day of HU when I switched. I found over the years that the dose went up and down according to counts but the overall trend was up. That does not mean the same will happen to you and you should discuss your concerns with your haematologist. Get yourself referred to an MPN specialist if your doctor cannot answer your questions. Hope that helps

[katiewalsh in reply to beetle]

Thanks beetle. Sorry to hear yours has progressed.