More Hydro

[Kelly2]

Hi fellow sufferers, latest recommendation from my haem to take 1000 mg per day without weekends. I guess he wants to lower my red cell counts and haematocrit which apart from the platelets have not moved with only 500 mg. Not glad at all and nervous with the new situation. How do we take the two pills? Both of them or do we split morning and afternoon? So scared for possible side effects.

[WileyFrench]

It will be okay. I was really nervous to increase my dosage but now take one one day and two the next all week. I take the two together in the morning when I take my clopidogrel. No issues at all - and platelets have come into normal range. It’s hard not to worry about it I know but we’re still on the low end of the spectrum so - onward and upward. Well except for the platelets where it will be onward and downward!

[Kelly2 in reply to WileyFrench]

O. K. Thank you! I will do the same. Better bombard them as a friend in here said

[ksos]

I agree -- it will be okay. My doctor increased my dosage from one a day to two and I didn't notice any difference -- and my platelets did move into normal range pretty quickly. From what he told me, adjusting dosage like this is very common. I take both my pills in the morning, if that helps.

Kim

[Kelly2 in reply to ksos]

Thank you. One person here mentioned that she takes her pills at night because there is some research that at night the right cells are targeted better leaving the healthy ones unharmed. Anyone knows more about this? Interesting to know more about that! I take the pill after lunch and my vitamins in the morning.

[Ovingite]

Hi Kelly

By coincidence I had a call from my hemp yesterday and she wants to increase my hydroxy from 10pw to 11pw. So I will now take 2 on Monday, Wednesday, Friday and Saturday and 1 on other days. I have always taken them at night which works well for me - no bad side effects. I'm sure you will be fine with them.

All the best

John

[Garstongal]

I take two 500mg tablets on weekdays and three at the weekend (and this dose may go up in the near future!). I take them all together in the evening and no change in side effects at all. Good luck.

[JenngeetingR828]

Hi Kelly2, I was put on 2 per day as well. I take mine at night and am amazed hiow my numbers quickly went into normal range within 6 months!! The fatigue is present, but improved as I was horribly tired before when my numbers were out of range. I also had significant pain in my lower legs and feet and that has also subsided. The biggest issue for me now is the nearly 50 lbs I have gained - which my dr says is totally unrelated?? (How is that so? They have to be related bc my weight has been on a rapid incline - and thyroid tests are all over the map, but also within range?!). Anyway- wanted to encourage you - the increased dose might not bother you and could have great results!

(I take mine at night too and rarely feel nauseous) -praying for you and wishing you the best!

[Kelly2 in reply to JenngeetingR828]

Τhank you, you have all encouraged me so much! I was thinking that taking the pill at noon permitted me to have a drink if I go out in the evening which is not very often I must say. Also I would not drink water for many hours. I will see what I will do about that. The doctor said the time doesn't matter. Now about the weight are you having any exercise? That is my problem too. I go out in the morning and come home early in the afternoon without any drive to exercise. I just want to sit and rest. Be well

[Searcher56]

I take 9x500mg a week plus 81mg aspirin in the evening because my job involves driving during the day. I am ET JAK2+ 63 years old and my platelets hover around 600-700. I used to take 2 per day and my platelets went down to 450 but I did feel peculiar. It was then agreed with the haemo that I could take 9 per week and have my platelets at an slightly elevated level. I have a theory that the body puts out these platelets for a reason which currently is unknown, and trying to lower them too much artificially is not good. When I started taking HU 2 years ago, I noticed a deterioration in my memory but really this could be to do a lot of other influences. I consider ET to be a symptom, rather than a cause of something else.

Other than that, I have not noticed any other side-effects which I could attribute to HU.

I bought the aspirin online from America, that's why it is 81mg.

[Kelly2 in reply to Searcher56]

Hi, I wish I had ET and not PV! My platelets are 434 with 500 mg per day which is not bad. My problem is my high haematocrit around 50 and other red cell counts thus the increase in dosage. Hopefully they will move downwards if not I don't know what's next.

[mbr8076]

Hi Kelly2,

I have been taking 1000mg In the morning as prescribed on Monday Wednesday and Fridays for 6 months and it did result in all my numbers going in normal range. I did not feel any difference other than a little tired and could take a nap if I give in but a busy life goes on I know when I started last March I was devastated to start taking a chemo pill:/ I have had no side affects other than a bit of lethargy here and there but that could also be the ET.

Best Wishes!

[mbr8076]

I did want to mention I also take 500mg the other days including weekends and 81 mg aspirin.

[follies]

You probably have seen by now that there are various medication timings and quantity. I have been recently diagnosed with PV and am taking 2 500mg pills a day, every day. As the most common side effect is nausea I chose to take them after breakfast. My hematologist insisted I take the 2 together and after a meal. Given my unpredictable schedule I decided to take them after breakfast as I am almost always at home. I was a bit nauseous the 1st few days but that has gone away. My appetite and energy has returned to normal. Just has my 1st phlebotomy. Am taking more blood tests in a few days and won't know if I am back into normal range.

[Kelly2 in reply to follies]

Hi. How often will you have the blood tests?

[follies]

I had lots of tests before my diagnosis. My hematologist ordered 3 more to determine the impact of the HU drug and the phlebotomy. So I'm too new to the process to know how many times this will occur. I talked to my sister's friend who has had PV for 20 years. When he feels tired, he calls his doc to schedule a blood test and then usually he gets a phlebotomy 3 or 4 time/year. My primary doc said the testing and phlebotomies will be more at the beginning of the diagnosis.

This is a great site to learn more about the variations of treatment and personal experiences. I am most concerned about changes to my lifestyle. I started feeling way stronger after the phlebotomy and was able to go to Zumba class for the 1st time in months. That was a perfect measuring stick for me.

[Tomaj]

I have been on two hydro since I was diagnosed in November. I have been reduced to one at weekends, but I am still on two on weekdays. I don't have any side effects. I take them both together in the morning with my breakfast to line the stomach. So far so good. I hope this helps.

Tom

[Sheryljean]

Hi Kelly,

I did take one in morning and one at nite,but since I could not handle the side effect..nausea mainly, my hematologist transferred me over to Jakafi..10mg twice a day. My cells dropped quickly and have stayed down for over 6 weeks. I had appointments every two weeks, but she has extended that to the 6 weeks.

Taking one in morning and one At nite really helps

Good luck!

Sheryl

[Kelly2 in reply to Sheryljean]

I think I will start one after lunch and one later in the evening as I want to be at home in case of nausea. After sometime I will see how to take them.

[Belgobrit72]

After lots of tweaking, we have found the right dose for me is 1 tablet 3 days a week and 2 tablets 4 days a week. I take them at night, both at the same time and with my aspirin. I used to do it at breakfast but kept forgetting them. Platelets have gone down from 920 to around 350

[Kelly2 in reply to Belgobrit72]

You bombard them alright!😏