Taking extra Hydrea on weekends

[JustKeepSw1mming]

Hi all,

Hope everybody is keeping as well as possible and you can enjoy the summer days, even with the strange weather this year Personally, I have been enjoying the cooler temperatures as I can get out 😊

I have ET and PV and have been on Hydrea for 7 months now (interferon didn't work). Initially, I was put on 1000/ per day. That brought my platelets down to 330 in just 1 month (they were at 1100 before treatment). However, I couldn't cope with some of the side effects (chest pains and difficulty breathing ). The dose was reduced to 500 per day and I got my life back, more or less. My platelets are at 680 now and my hematologist would like me to increase the dose to 1000, at least twice a week. I am working full time, so would probably have to be on weekends, but I am nervous. I take my tablets just before going to bed to "sleep through the side effects", but here I will need to take the additional tablets in the morning.

Has anybody else had to do the same? Do you have any advice?

Thank you very much.

Take care

[Cat1001954]

hi why not try 1 in morning and the other at noon ght x

[JustKeepSw1mming in reply to Cat1001954]

Hi Cat1001954,

Thanks for replying. That is what my hematologist suggested as well.

I know I feel aweful if I wake up during the night, after taking my evening dose. But I guess one way to find out.

I wondered if anybody else did this.

Thanks

[Cat1001954 in reply to JustKeepSw1mming]

I meant night lol x

[RietFontein in reply to JustKeepSw1mming]

Hi there. I've been using Hydrea now for 8 months. Little bit of side effects in the beginning but it's all over now.

I was on 1000mg per day - used to take both tablet same time at 17h00 daily.

Plateles down to 260 - my Hydrea intake now 1000mg daily except on Mondays and Fridays. (500mg - one tablet on these two days)

I found taking both tablets same time in late evening to be the least interruptive!

Good luck!

Hein

[Rem31]

On my two capsule days I take one in the morning and one in the evening. It works well for me.

[JustKeepSw1mming in reply to Rem31]

Thank you very much, Rem31!

That gives me hope

[kid12kg]

Hi , I am taking one in morning and one in the evening too but Saturday and Sunday only 500 mg each day. My platelets went down to 310

[JustKeepSw1mming in reply to kid12kg]

Thank you, Kid12kg

[Oscarsboy]

On my two capsule days, Saturday, Sunday, and Monday, I take them both together. Thankfully, I don't really have side effects after taking them, so I appreciate it's a bit of a juggling act for you trying to find what suits you best. Hopefully you will be able to find a happy medium of toleration that your body will settle into.

[HazeBlue in reply to Oscarsboy]

can take the extra dose at night when you take the regular one. Two together is what I do

[JustKeepSw1mming in reply to Oscarsboy]

Thank you very much, Oscarboy. Yes, it's finding a balance between two ng the medicine and still enjoying life.

[Shanders]

I take two Mon-Fri and three tablets Saturday and Sunday. I take them all at one go but have found that if I take them right before a decent sized lunch that it limits any side effects. On the occasions that I have had my extra dose days on an empty stomach or in the evenings I feel like I have been hit by a truck.

[JustKeepSw1mming in reply to Shanders]

Thank you for the tip, Shanders. I think that bus comes past my house too. lol. If I wake up during the night, after taking my pill after dinner, I really feel it

That what makes me so nervous about taking an extra pill in the morning.

[Ebot]

Hi there.

I was on Hydroxy for quite a few years. I always took them at night regardless of the dose. You don’t need to split morning and evening. All the best.

[JustKeepSw1mming in reply to Ebot]

Thank you, Ebot.

My hematologist had a theory that splitting them might be easier for me to tolerate it. I would rather sleep through side effects though. I guess one way to find out.

Thank you very much for replying

[Hayley2011]

I was taking my 2 hydroxy tablets together but it didn’t bring platelets down. So now I have to have 1 in morning and 1 in evening Mon-Thursdays. It controls them a little better but still very up and down on the same dosage! I hear you though the nausea is unreal and fatigue is crazy. Try taking them together on Friday and Saturday evening, that way you have Sunday to recover a little, fingers crossed it works for you.

[JustKeepSw1mming in reply to Hayley2011]

Thank you very much, Hayley.

I took my second tablet during the day yesterday, and boy did I feel it. I think I will try taking them both at night the next time to see how that compares.

Take care of yourself and all the best.

Mary

[Exeter21]

I would advise seeing or speaking with an MPN expert on our treatment. Quality of life is more important with medication that has no adverse effects. I came off Hydroxy for that reason & onto Peg Interferon on a low dose. It has been a life changer .

There are many alternative to Hydroxy & perhaps the Interferon was given to you at wrong dose. Dropping platelets fast appears to be a Haemotology dept ambition.

If you speak with an MPN that is not their view. Even a phone consultation would give you good advice . If I had increased my Hydroxy anymore my physical life would have been wrecked . It mad me exhausted.

Off it I am normal again & back to fitness.

Really worth the effort to get second opinion on your treatment & most of us on here have an MPN for that . Mine emails or phone consultations .

Peg Interferon takes a while but must be a very low dose to start. I wonder if your doseage was the reason you came off it.

Julia UK.

[gardner99]

Hi, I have ET jak 2 & recently had my hydroxicarbamide increased to one tab daily and two tabs (1g) three days a week. On these days I take one at 7am and one at 7pm. Apart from tiredness, no other noticeable side effects. On the one tab days I take it at 7pm. I always try to have the meds after food, and with plenty of water.Hope you get on OK.

[Michali45]

Hi, I also had to increase mine to 1000 at the weekend but I take mine together just after dinner. I haven't had any problems with doing that but, on the other hand, I haven't had any problems with Hydroxy at all. I hope you find the best way for you.

[quanglewangle]

I take my once-a-day meds with breakfast and twice-a-day meds with main meal (tea evening meal by other names!) so my every other day extra 500mg capsule goes in with that batch.

No apparent effects whatsoever. Of course I also get some side effects but they have not changed on dosage changes (one a day/plus one at weekends/one or two alternately)

P. S. Pill organisers are a great help - I have 3 - marked breakfast, lunchtime and tea and that ensures that I get my extra doses of magnesium, Vit C and B12..

[Hydrox]

Always took my two together at night, didn't notice anything different.

[JULS65]

I’m ET triple neg and take 1,000mgs everyday. I used to take both at night, but found I was really restless during the night and would waken feeling like I had a hangover!! I split the dose to one at breakfast and the other couple of hours before bed, made such a difference to me.

[Plavers]

Hi, I’m 74 but still working. I’ve got ET Jak 2 and I take 500mg of Hydroxy during the week and 1000 at the weekend, but I take both tablets at night. I was never directed to take them apart - but I haven’t got an MPN specialist on my case (although I’ve been diagnosed and treated for three years now) however later this month I have my first appointment. I don’t think my symptoms- fatigue- bone pain - skin itching are any worse at the weekend- but it’s something I’ll look out for. I didn’t realise you could have a ‘dual’ diagnosis of both ET & PV it obviously hasn’t stopped you living your life and working an inspiration. Paul

[ciye]

I take 2 x 500mg at breakfast, could you leave couple of days between taking your extra dose or do they have to be taken consecutively. I refuse to take any extra doses as its a struggle on current dose.

[Tyce500]

Hello

I take 1000mg daily now (started at 500mg daily) and have always taken at bedtime, I do feel very groggy in the morning but this passes very quickly didn't think it was the tablets but obviously must be although I am not an "early bird" anyway! My platelets have not dramatically gone down unlike yours after a year on these tablets were 855 and went down to 417 but now up again to 544 so looking for alternative 🤞