About Hydra

[neela2020]

I want to ask those on hydra, are they taking medicine continuously or its on and off and readjustment of dose after monitoring counts (weekly/monthly) throughout journey??

[Tilly_Rose]

I am taking mine continuously readjustments have been made but I seem to be fine now I take 9 a week

[Tico]

Hi neela. I take 3 a day for 6 days and 4 for the seventh day. I have been taking hydrea for around 12 years continuously, the highest dose I ever took was 5 a day for 7 days a week. Atb,tina.🤗

[linphy]

I take 1 a day Monday to Friday, rest days weekend

[ksos]

My dosage was adjusted when I first started, almost three years ago, until it had consistently lowered my platelets, which took about six months. Since then, I've been on 2/day and haven't had any changes since then.

Take care,

Kim

[mhos61]

I take four tablets a week. For now, this keeps my platelets around 320ish.

At diagnosis (2016), I was commenced on one hydrea tablet daily. This reduced my platelets very quickly. My CNS then put me on one tablet Monday to Friday only. I have had stable counts during this four year period.

For the past four months I have reduced the hydrea myself from five tablets a week to four to see if this made any difference. It hasn’t, so I’ll stick with this for now. By the way, my CNS is aware of this.

[neela2020]

My problems seems to be unique. I am MPN PV , all the three counts were UP (moderately) initially without medication, now it is continuous adjustment of dose to get all the three in limits. I am taking hydra twice daily which resulted in RBC slightly lower, ( and so PCV 33%) platelets in limit now, WBC UP @ 15000. Doctor asked to continue same dosage, I am worried as what if RBC goes further down and WBC refuse to come down. They don't explain anything and say we have to wait and watch till dose is adjusted.

[mhos61 in reply to neela2020]

Sometimes when you begin medication it takes a bit of adjustment to get the desired results. However, you are right to have concern. Make sure you get a print out of your bloods, and keep a close eye on your counts.

Be your own advocate. If you’re not happy with the way things are going, ask what other treatment options are available.

[Uzza]

I am taking mine Mondays, Wednesdays and Thursdays.

[Doggy1903]

Have been on hydroxycarbamide for about 2 years and team are excellent. I have bloods checked every 4 months and then my dose is adjusted accordingly. Hope you get looked after as well. So far so good, no side effects.

Really hope you keep well.

[Lifam]

It's all depends really. I gave blood test every 3 months to my MPN haematologist instead of 2 monthly now, but still having blood test every 2 month with my GP (I asked for this regular blood work) so to monitor my kidney, liver etc etc. I am now taking 500mg HU 6 days a week instead of 7 days and clopidergrel 75mg daily. Whichever way it is, as far as I understand that we have to be on it for life.

[MiltonBradley]

I was diagnosed with ET In February 2018 with platelet count of 1 million following a heart attack at age 58. I was prescribed Hyroxyurea 500mg once per day. A few months later because my platelets count was not dropping enough hematologist adjusted meds to 1000mg MWF and 500mg other days (10 tablets a week) and my platelets reacted and went down to 300mg. I have been on that regimen for 1-1/2 years and still good with no apparent side effects

[hunter5582]

The standard monitoring protocol for hydroxyurea (if that is what you are taking) is every two weeks when initiating treatment. This way the doc can monitor your response and adjust dosing as needed. As you are hearing there is a wide range of dosing needs. This is really about your individual response to the medication. The doc will also monitor for signs of toxicity so do be sure to report any concerns. Some tolerate Hu just fine. Others do not. All the best to you

[Wyebird]

I take 17 a week plus 9 anagrelide a week. After 4 years I’ve been stable for about 6 months now 😬

[P-O-T-S]

I take 1 hydroxycarbamide(500mg) per day 7 days a week, it used to be a gram, then less at the weekend now it seems stable for now at current dosage, I have MF, proliferation phase.