ET, Lower Hydroxycarbamide

[linphy]

Afternoon everyone, seen my consultant today, platelets are down to 386. Consultant was pleased doesn't want to see me until October. I was put back on Hydroxycarbamide 500mg 1 a day in May, Monday to Friday. See consultant end of June, 486, he increased my dose 1000mg, 2 a day Monday to friday, I have been feeling exhausted after a couple of hours of getting up. See new consultant today and she's happy my platelets are 386 told me to decrease Hydroxycarbamide to 500mg 1 a day Monday to Friday. Hope this makes senses to you all

Linda

[mhos61]

That makes perfect sense Linda.

Your new dose is exactly what I’m on. Hope it keeps your platelets stable and that you’ll feel much better.

Mary x

[linphy in reply to mhos61]

Thank you Mary, hope your well x

[Sanmob in reply to linphy]

Yes .Me too.

All the best. Sandra

[Hidden]

When my Haematologist was trying to balance my platelets she kept increasing it very slowly, eg now on 2x daily mon-fri and 3x on sat&sun, so surprised they just basically doubled yours to shift the numbers. More surprised that once target achieved that they have returned to initial dose which they perceived not to be enough.

[Garstongal in reply to Hidden]

Hi Yorkie...you post echoes my experience exactly! My haemo said that he wanted to stabilise my platelets gradually and altered Hydroxy by a tablet or two over three months until they finally settled. I’m now on 2 tabs Mon to Fri and 3 at the weekend...will be interested to see if platelets alter either way by October.

Best wishes x

[linphy in reply to Hidden]

I was on 500mg last year 1 a day but after being on it 5 weeks had a bad reaction was taken off it and put on aspirin and Anagrelide which gave me bad palpations, was taken off that and put on pegasys. I was taken off aspirin and pegasys due to a bad reaction of hives ended up in hospital for a week. Was off medication until October, when I was put on clopidogrel and restarted Hydroxycarbamide a few months ago. Due to bad reactions they have been careful what dose they have given me. It has been a bit of a roller-coaster, my original consultant left at Christmas then had a temporary consultant last two consultations, yesterday another consultant whom has said I will be seeing her in future

Linda

[Tico]

Hi linphy, my hydrea has been that much tampered wiv ova 10yrs i truly get confused wiv it myself at times! Wil wait 4 next visit 5th sept, 2 see whats said! Currently on 3daily, 7days a week. Highest level i've been on is 5daily 7days a week,lowest level daily 7days a week.i think my body is crying out 4 a rest wiv all the different levels of cyotoxins its been put thru! Atb.tico

[Tico]

Shud ave said 1daily, 7days a week lowest! Still got the brain fog going on,lol.tico.