At last

[indy22]

Attended my appointment today and have started on Hydroxycarbamide 500mg to take 1 per day for 4 wks then go back to see if they need to up dosage or lower dosage , my platelet level sitting at 600 .

[Mostew]

Do hope you feel better taking it .

[indy22 in reply to Mostew]

Thank you 😊

[lakeview65]

I started Hydroxy 2 weeks ago. I am taking 1000mg a day, I go tomorrow to check my platelets. Hoping someday I can reduce the number of pills each week. The highest my platelets got to was 697. I was not happy at all about starting this med but I am high risk due to age and Jak2. So far, so good. No side effects.Hope it is the same for you.

[indy22 in reply to lakeview65]

Thank you, I hope I will be OK on them I have also to continue aspirin . I am glad everything is OK with you long may it continue 😁

[hunter5582]

If you are sitting at 600 then you have reached the cytoreduction target recommended by many MPN specialists these days. There is no particular value to reducing platelets to "normal" values as it does not reduce your risks. silvermpncenter.weill.corne...

So good news, It sounds like you are on the right track. Hope all continues to be successful.

[indy22 in reply to hunter5582]

Hi I haven't started taking Hydroxycarbamide yet, taking my first tablet today and to be honest I am finding it hard to actually take one ! I am sitting looking at clock trying to decide best time of day , before or after food , before or after my other medication (aspirin, omeprazol) or even taking it at all . Confused and a bit scared to be honest .

[amhann in reply to indy22]

Hello indy22 - I was just the same starting hydroxy (scared myself witless just reading the side effects sheet and only picked up the tablets when a lovely very elderly lady who was also waiting patted my hand saying ‘don’t worry dear, I’ve been on these for 15 years’)!! It is scary starting them but they certainly bring down platelet counts. I found that for me the best times are aspirin after breakfast, and the hydroxy mid evening after dinner. I do hope you get on ok with them and that you have a good team who will properly monitor you and answer any questions or issues you want to discuss. Very best Anne-Marie x

[indy22 in reply to amhann]

Thanks for that reply and yes I was thinking the same taking hydroxy in the evening so if I do feel anything I will be at home 😊

[hunter5582 in reply to indy22]

HU can be a bit hard on the stomach/GI system. Best to take it with food. Also important to stay very well hydrated throughout the day to minimize toxicity. Time of day is really a personal preference, but with dinner would be fine if that works for you.

Note that when adverse effects do occur, they are rarely immediate. It takes time for them to show up. Hopefully you will be able to tolerate HU and benefit from it. If you do encounter adverse effects, then there are other options for cytoreduction.

[Oscarsboy]

I have now been on Hydroxy two months 500mg per day and an extra one on Saturdays. I had bloods done a week go Monday and platelets had dropped from 514 to 445 in just under three weeks. Originally were just over 550. I am hopeful too that I may be able to drop the "extra one" at some point. I have another phone appointment mid November and blood test prior to that to see where they are then. In the meantime I have been fortunate enough to be put forward to Guys and St Thomas also for a review by their team to discuss all the avenues open/new drugs/ etc. They will also be running a test then so will be interesting to see where we are at by the end of October when I have that appointment.

[Minu68]

I had some nausea at first when taking Hydroxy, found taking them in the evening with plenty of water helped, nausea gone when I woke up in the morning. I’ve kept to this routine, though I don’t get nausea anymore as my body has gotten used to it. It lasted a few weeks for me, been on it since March 2020. Hope it goes well for you x