Does anybody take very low dose of Hydrea? - MPN Voice

MPN Voice

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Does anybody take very low dose of Hydrea?

love0826 profile image
22 Replies

Hi all,

so suddenly my counts are more normal, after taking 500mg daily of Hydrea for a little more than a year. The doctor suggested to try 500mg every other day, to "try" how that goes. At first I was all excited, but now I am thinking....what if that messes everything up? Like if it all spikes up, and then I have to start kind of all over? So I am on my first "off" and feeling weird, but I am not sure if I am just imagining that....

Does anybody have experience with that low dosage?

Thanks so much.

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love0826
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22 Replies
Swede profile image
Swede

Hi.yes.I used to take 2 aday but now 1 only twic a week!

As I recently had an BMB I hope I am sort of stable...or even better...

I have been drinking bone broth for a while...might be good for me,as well as lots of fermented food and beans.All my tests have been fine so I'm happy!My severe bone paine is neeeeearly gone.

love0826 profile image
love0826 in reply to Swede

OMG, Swede, that is AMAZING!!! Wow, from 2 daily to 1 twice a week! I am happy for you! Thank you for sharing....this can give a lot of hope. I guess, I am kind of scared these days. I also eat lots of beans, drink tons of water, some coffee though, raw garlic, raw ginger, onions, and raw veggies. Keep us posted. :)

WileyFrench profile image
WileyFrench in reply to love0826

That is an amazing story, Swede. Usually we hear about dosages being increased so it’s great to know that it can go the other way too.

Searcher56 profile image
Searcher56 in reply to Swede

I am interested in bone broths. I found a supplier of organic meat bones on internet and now I have been making all kinds of broth, chicken, beef, lamb, duck, with vegetables. I cook them in the slow cooker for 24 hours with a little apple cider vinegar. There is something very wholesome about bone broth, even if my concoctions would not win Masterchef! Also fermented foods, I make fermented cabbage, recipe can be found on the net. I feel amazingly well with this new eating regime, although I don't know yet if it has made any difference to my platelets. The body needs time to heal.

Swede profile image
Swede in reply to Searcher56

Hi,I also make bone broth et cetera.I make it mostly from beef as it is most potent.I also make Kefir.

Yes,I am down from 2 x 1 cap.Hydrea /day, to 2 caps./per week!

I also eat fermented food and beans. No sugar if I can avoid.

If the food has effected my test results?No idea but as I feel better I will stick to it.

georgevanier profile image
georgevanier in reply to Swede

Hi, I know this post is a few years ago, I have just started taking hydrea and was wondering about the bone broth, do you have it home made or can I get it already made. would love to give it a try also how often do you have it. Thanks

Heather Keep well

hunter5582 profile image
hunter5582 in reply to georgevanier

I love bone broth as a base for soups and stews. It promotes general health and is a great source of collagen. I do not know that it does anyting for MPNs specifically but it sure does taste good. I do make my own and also use store-bought; however, shop carefully as some premade are loaded with sodium. I only buy low/no sodium broth.

My favorite bone broth is made from smoked poultry. I also smoke my own meats. You can make a fabulous soup with leftover turkey, smoked bone broth, kale, beans, and veggies of your choice. Delicious and nutritious.

All the best.

georgevanier profile image
georgevanier in reply to hunter5582

Thanks, smoked poultry sounds delish, will be trying beef bone broth in the slow cooker. Hope it's good. Thank you so much, Keep well

Heather

hunter5582 profile image
hunter5582 in reply to georgevanier

Needs at least 24 hours. 48 hours is better. It really is very good.

Nickthedevil profile image
Nickthedevil

I have gone from 1 x 4 days and 2 x 3 days (10 per week) to 4 per week over the last few months. My platelets have risen slightly but are still in the normal range. Like Swede, my bone pain has improved enormously. Karen

Kelly2 profile image
Kelly2

Hi, mine dropped to normal after only 20 days of taking 500 mg daily. So doctors orders were to take the same dose daily except weekend. I'll have a test tomorrow to see how it went but I have a cold and my white cells might show irregular. I'll post results.

Kelly2 profile image
Kelly2 in reply to Kelly2

Nope! The new lower dose did not do any good. Platelets rose from 280 to 520! So back to previous I guess. Will know on Monday.

love0826 profile image
love0826 in reply to Kelly2

Thanks so much Kelly2, good to know. I will know in one week how it went with me. But you know, we can always hope.

Kelly2 profile image
Kelly2 in reply to love0826

Maybe it was very soon to lower the dose after only 20 days. I suppose counts have to be stabilized for a while and then slowly make changes. I hope you will react better!

catkinspolymer profile image
catkinspolymer

If you have regular blood tests I dont think things will change so quickly I originally started on 18 tablets a week and over 25 years it is now down to 9 a week,

all the best Town crier

Mbzimb12 profile image
Mbzimb12

I take 500 mg each day since 20 months.

Kelly2 profile image
Kelly2 in reply to Mbzimb12

And how is your blood count?

Wyebird profile image
Wyebird

Oh lucky you. I do hope it continues

love0826 profile image
love0826 in reply to Wyebird

Thank you Wyebird. I will know next week.

Petsch profile image
Petsch

Yes I take every other day and have been good for 3 months. Blood work done monthly so if numbers go up it will be caught quickly and dose increased. You have a great dr who is actually suggesting this most never decrease anything. I was the one who asked my dr if I could try. Really nothing to loose. So enjoy this as long as you can and realize you’re giving your body a break from that horrible drug.

Good luck consider yourself one of the lucky ones

love0826 profile image
love0826 in reply to Petsch

Hi Petsch, and thank you so much for your response. Good to hear your story. I will know next week....I am also going for at least monthly checks, now my doc suggested to come back in 2 weeks to see how I do with the low dose. I am lucky to even try reducing the dose, I think at the same time I am just worried that everything spikes and I have to start all over again. Just my own fears....but you are right, I better enjoy this coming week with the little break of the drug. I am lucky. Thank you for the inspiration!

krotsida profile image
krotsida

Yes, from 1 a day ,I am taking 3 a week. I am ok. with that for more then 2 years.

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