What time to take hydroxycarbamide

[Jelbea]

Yesterday there was a post about what time to take hydroxycarbamide. I have ET jak2 positive and I have been taking 500 mg hydroxy daily for two-and-a-half years very successfully from the point of view of blood levels. I do suffer fairly severe fatigue and try to counteract this by daily walking.

I was interested in one of the replies where the member stated that 40 minutes after taking the dose he/she is overcome with fatigue. This happens me every day within an hour of taking my dose. I could just fall asleep no matter what I am doing. It is really marked and I wonder if anyone else has this side effect.

As I sometimes do not sleep very well at night I decided to take hydroxy before bed but because of having to drink a glass of water afterwards I found I was having an extra night-time trip to bathroom. I reverted to taking the dose in the morning just before breakfast once again.

I have not seen this mentioned before and was just curious if many others find this as well.

[saltmarsh]

Sorry about the issues with HU. I alternate with 500mg one day and 1000 the next. I take mine immediately after lunch and immediately after dinner. I haven't noticed any impact on fatigue which usually hits me 3-4 in the afternoon regardless of what dosage I have that day.

I drink about 30 ounces of water by lunch and tail it off in the afternoon. At the age of 76 I hit the bathroom once per night. I have found that drinking a lot of water in the morning has eliminated any dizziness and I guess is keeping my blood happy.

The fatigue for me is a bit of a downer but I start my day early so that may contribute. The other thing I've noticed is that when I try to power through the fatigue, I wind up feeling terrible, so I just accept it, lie down for a bit and feel much better after.

Wishing you the best on finding what works best. Perhaps also consider what you're eating and whether it's making the fatigue worse. I eat 4 small meals between morning and early afternoon and a light dinner. Works for me but we're all different. Good luck.

[Jelbea in reply to saltmarsh]

Thanks for your reply. I, too, keep very well hydrated, don't drink alcohol and eat a healthy diet. I think this very marked side effect is entirely from the HU and not due to anything else. I have constant fatigue all day long since starting on HU but this extreme version lasts for up to an hour. The only other side effect is some itchiness but this could be due to another medication. Good Wishes

[saltmarsh in reply to Jelbea]

Was thinking some more about your post. You mentioned that your blood levels are good so I was wondering if, perhaps, you don't need to be taking 500mg every day. My dosage was cut in half almost 18 months ago by my new doctor (the previous one had dropped the ball on a few fronts) and my numbers continue to be good, if not better. Just a thought. Wishing you the best.

[Scottishterrier]

Hi jelbeaI too am on Hu and have et Jak 2 positive I have been on it for many years I take mine at breakfast time after I have had my breakfast as it gives you a lining on your stomach am afraid it is a side effect I had a marvellous consultant at the time she said if I could try and take a couple of hours sleep in the afternoon

Stay safe

Best wishes

Scottish terrier

[Jelbea in reply to Scottishterrier]

Hi Scottishterrier - Thanks for your reply. From I started on HU I have suffered the daily fatigue as so many others do. The extreme version of this fatigue is what I was trying to describe. Within an hour of taking my HU I am literally overcome with extreme sleepiness and then this lasts for about 45 - 60 minutes. I then revert to the usual daily fatigue. I just wondered if many others on HU have this side effect.

Thanks again for all good wishes

[Exeter21]

I stopped Hydroxy due to horrendous tiredness. It was the drug completely. As soon as I was off it my energy returned. I then saw MPN & changed to Peg Interferon & have been back to a normal life.

Unfortunately I feel some of these drugs affect people differently & Drs are all too happy to blame your complaint if they feel your drug is working. Quality of life is very important so suggest seeing MPN re your alternative drug treatment. Good Luck . Julia .

[Hydrox]

I had the same problem with Hydroxy, and was advised by my hospital nurse to take at night which I do. I do get up during the night for a toilet but I go straight back to sleep, so it works for me.

[Jelbea in reply to Hydrox]

Hi Hydrox - Thank you for your reply. I did try night time dosage but because of other medication having to be taken then and also the glass of water after Hu it just was not for me. I was already up once at night and I do find it difficult to get back to sleep again.

So glad it works for you. Good Wishes

[JustKeepSw1mming]

Hi Jelbea,

I am taking HU after dinner and you have just described my every night!

About an hour after taking my pill, I "crash", as my husband calls it.

It is better since I reduced the dose from 1000 to 500, but it is still a strong feeling of a physical exhaustion and I just need to go to sleep. Evenings of watching movies are not for me anymore. I have to be in bed by 9.30 pm.

When I was on the higher dose, sometimes I had to prope myself up standing, after taking my pills. The tiredness was extreme.

I try to drink water as much as I can during the day, but still wake up at night completely parched. So I am drinking water at night and then the unavoidable trips to the toilet.

I do find it hard to get back to sleep and toss and turn for hours sometimes.

It is very interesting to know that I am not alone!!

Take care.

Mary

[Jelbea in reply to JustKeepSw1mming]

Hi JustKeepSw1mming - Lovely to hear from you. I think some of the members who read my post thought I was wanting to change from Hu. I maybe did not express myself very well. I was just interested in how many others suffer like you and I.

It really knocks you for six. It took me a while to realise that it was the Hu that was causing it but there is no doubt. Within an hour of taking my dose the extreme fatigue hits. I take my dose just before my breakfast at about 8.15 am. I did try taking it just before bed but having to drink a glass of water after the dose meant an additional night-time trip and I also have another medication to take at that time so I resorted to morning dosage. I seem to do nothing but drink but like you I waken up parched. I use Oralieve dry mouth relief spray which helps a bit. Like you, once awake I find it hard to settle again.

Thanks again for your reply. Sometimes it is easier to accept these things when you know you are not alone. Best Wishes

[JustKeepSw1mming in reply to Jelbea]

I agree, sometimes just knowing we are are not alone in his helps.

Thank you very much for mentioning the oral spray!! I was not sure if that was just me having that issue. I often wake up as it gets so bad. Will give it a try!!

Have a great day and all the best!