Does anybody take very low dose of Hydrea?

[love0826]

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.

[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 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 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 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 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 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 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 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 in reply to georgevanier]

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

[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]

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 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 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 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]

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]

I take 500 mg each day since 20 months.

[Kelly2 in reply to Mbzimb12]

And how is your blood count?

[Wyebird]

Oh lucky you. I do hope it continues

[love0826 in reply to Wyebird]

Thank you Wyebird. I will know next week.

[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 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]

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