medication

[Footballwidow66]

I have ET with Jak2 following an appointment with my haematologist on Monday, I am due to start Hydroxycarbamide 500mg on Monday, due to age as my platelets are only 786, the fatigue I have is already unbearable, would I be better to take at night or in the morning?

[Mieshie]

my response was to take late in day due to possible side effects. It turned out not to matter as it caused to overwhelming bad effects 24 hours a day even after lowering dose. It took a month to get it out of my system. I also saw a liver specialist to confirm if the drug or another condition was causing very high liver enzymes. It was the drug. Platelets trended down but taking this drug was worse than the disorder. Gastric issues, mouth sores, extreme headaches, lower back pain and extreme brain fog. There are drug options thankfully so do not despair if these effects result. We all react differently. Until you try it, you won’t know how well it suits you. Please also consider the drugs use different ways to address platelets. Hydroxy is quite different from anagrelide, both of which are quite different from the interferons. Good luck.

[Hbm1]

I started 500mg a day last May. I take it in the morning as you really benefit from taking lots of water with it so the night time option didn’t appeal. You really need to do what suits you best and then stick with it. My fatigue was also bad but has since gone when I found my Vit B12 level was low. It’s worth getting this checked out as a low ‘normal’ result can be indicative of deficiency. I’m having regular B12 jabs and almost all my previous symptoms which I had put down to E.T. have gone. There’s seems to be a link between E.T. and MPNs, hydroxycarbamide and B12 deficiencies and I’m seeing an MPN specialist in a couple of weeks to try and find out more. I hope this helps you.

[MissLesley13]

Hi. I was told to find out what was better for me. I take it on a dinnertime at moment. Unfortunately my fatigue is still bad. I hope this helps.

[Luvlyhubby]

My husband has always taken Hydroxyurea before going to bed,he decided on this due to people saying it causes nausea & thankfully has had no problems @ all. Fingers crossed you find the time that suits you

[Scottishterrier]

Hi Footballwidow66I have been on Hu for many years but the tiredness does subside I take mine in the morning because I was feeling so tired and I don't work because of a brain op that went wrong I was seeing my consultant and she said if you can have a sleep in the afternoon which I did but eventually the tiredness wore of and I can go the whole day with out sleeping so hopefully it will pass with time with yourself

Stay safe

Scottish terrier

[30371madison]

I am on 1500mg for over a year and found that water is your best friend. Keep the water flowing and the side effects can be tolerated. Head aches, fatigue, joint pain and brain fog are what you can expect and manage if you hydrate. Everyone is different. Best of Luck

[summerdown]

Hi. I was diagnosed ET and Jak2 in 2019 and have been takin HU since. I take 10 500g tabs a week. Tiredness is I. its trial and error really. I need a boost about 6.30

[micky10]

Hi, I too have ET with JAK2 started taking Hydroxycarbamide 500mg last Saturday evening (7pm). My platelet count was 737. So far I’ve had no bad side effects. I drink 750ml bottle of water to help stop mouth ulcers and this week have seen an improvement in my tiredness. Good luck , hope all goes well for you.

[summerdown]

I take my tablets at night - along with statin, clopidogrel and nizatidine with a large glass of water. I checked with pharmacist who said if it suited me it was OK. About 8. ish id best for me - otherwise I would have to get up a few times..

[Zoebowie]

I started Hydroxy 500 mg in February 2024 and was advised by various members on this forum to take the tablets at night and to drink plenty of water- 2 litres a day which I try to do but don’t always succeed every day. I was on the tablets 7 days a week for the first few months but then my platelets started to come down to normal levels and I take Hydroxy Monday to Friday now. Thankfully I have had no major side effects and I hope you’ll be ok taking them too. I’m 72. Good luck.

[BrookTownsend375 in reply to Zoebowie]

Me too, I'm doing exactly what you do!

[Zoebowie]

sorry I meant to say I also have ET Jak 2 plus a heart condition.