New to Hydroxycarmide

[Lezza1971]

Hi all

I’m 46 and have PV but also raised platelets diagnosed in 2016. Until now I have been having aspirin and regular venesections but have now been prescribed Hydroxycarmide one daily due to rising platelet and hematocrit levels and difficulty tolerating venesections (fainting!). I’m only a few days in but wondered how long it might take before I can expect levels of platelets and hematocrit to reduce assuming it works! Also does everyone have lots of side effects? I feel a bit dizzy but did before taking it. Thanks

[shiftzz]

Hi Lezza. My numbers fell quickly when I was given Hydro. I'm movingfrom Hydro to interfron, but it's a slow process, plus I have venesections. Hope Hydro works for you.

[Lezza1971 in reply to shiftzz]

Thank you for your reply. Did Hydro stop working for you or were you experiencing side effects?

[shiftzz in reply to Lezza1971]

No real side effects. I am retired bit did strigger at work. I was pn 3x500 mg for 5 days and 2x500mg for two days. My numbers were ok. I've had over 45 venesin just over 3 years. Mow on less Hydro plus 135 interferon injection once a week. It's taking its time to kick in.

[revfee]

Hi, I have PV too and my platelets have been affected for a long time so been on Hydroxycarbamide for nearly 30 years. Fortunately I don't have much at all in the way of side effects, not all of us do lets hope you are lucky too. My experience when HU has to be increased is that it kicks in pretty quickly so you should see a difference fairly soon.

Hope you feel better soon. best Fee

[Lezza1971 in reply to revfee]

Thank you so much Fee that’s good to hear that it has been working so well for you for so long. I hope I’m so lucky too!

[Kelly2 in reply to revfee]

My goodness 30 years it is unbelievable! Why does it have to be increased? One would have thought the opposite i. e. That once having achieved that the platelets are lowered the dose is reduced.

[gset]

I was on the drug for 10’yeara and found little side effects - once I was in the right dose to get the platelets down I was less tired than having the high platelets, that took me about 6 months. I kept up a top job whilst on it so it didn’t stop me doing things. However we are all different and I have found other drugs harder to tolerate and with less impact on platelets, so the main thing I found is to try and not be anxious and take each day as it comes. That really helps. Also drink lots of fluid to keep hydrated. Good luck

[Lezza1971 in reply to gset]

Thank you, good advice to take one day at a time. I must make a conscious effort to drink more too.

[cvita71]

Hi, I'm also 46 and have PV, JAK2 + and I live in Zagreb, Croatia.

I take HU 2 tablets a day from the August of last year and I feel great, much better than when I was on venesuctions. There are times when I feel a little tired but then I'm resting and tomorrow is all right. My counts have been close to normal in a two months of taking it, then we have increased the dose on two tablets and are now super.

Please dont't be afraid of it, the drug has made miracles for my counts and works great.

[Lezza1971 in reply to cvita71]

Thank you it is so good to hear such positive stories. My platelets are around 1100 and hct 49 so am hoping for a reduction in both!

[cvita71 in reply to Lezza1971]

It surely will, it just takes a little time for counts to fall and to adapt the dose and get used to it.

[Ebot]

Hi. I’m about five weeks into Hydroxy - one a day. My platelets tumbled from 1700 to 950 in the first two weeks and then to just over 600 a fortnight on. And I haven’t needed a venesection either. Infact HCT dropped slightly. WBC also heading south. No obvious side effects. Although I seem to be getting more stomach discomfort and indigestion. Not sure if this is related. With HCT down not getting that awful ‘someone is sitting on my head’ feeling. And managing to control post shower itch. Hope it works for you.

[Lezza1971 in reply to Ebot]

Thanks so much for your reply. It’s great to hear that it worked so quickly for you, I am hoping for the same. Love the description ‘sitting on my head feeling’ that’s exactly how I feel some days !

[forwardocho]

It takes a while to get into your system. I was a high dose when diagnosed with ET (4x 500mgs) daily, which was reduced to 3x 500mgs a year ago. I'm off aspirin altogether now. I find taking it the same time every day with a meal or snack keeps the side effects at bay, but it's rare I have any nowadays, except fatigue but that could be due to too many late nights!

[Poppy112]

Hi I also have PV diagnosed December 2017 I am currently using Interferon which is working well. My counts at diagnosis were very similar to yours platelets were 1100 and HCT was 49. I am also just slightly younger than you hence why I am on interferon. My counts in the 3mths of starting treatment have all normalised platelets now 419 and HCT 43. I am tired but in the process of making work pattern adjustments and taking it easy when I can (easier said than done). I exercise regularly run 5k every week which helps to clear my head. Keep positive I sure you will see good results with Hydroxy. All the best x

[Lezza1971 in reply to Poppy112]

Thanks for your reply Jen, great to hear that interferon is working so well for you and that your numbers have reduced so much. I feel tired a lot too but try to stay active - I have a boisterous dog who won’t let me rest for too long!