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Long term medication Hydroxyurea

Posted by lindy25 @lindy25, Aug 12 12:26pm

Hello
I was recently diagnosed with the JAK 2 mutation. My hematologist prescribed 500 mg of Hydroxyurea 2 times a day.
I just started taking it 6 days ago. So far I haven’t had any side effects, maybe stomach upset but I also have diverticulitis so it’s hard to tell.
I’m really grateful for this support group. So many of my questions have been answered by reading through the posts.
Most of all it’s nice to find others who know what’s going on, none of my family & friends understand this.
Thank you

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Profile picture for nohrt4me (Jean)
nohrt4me (Jean) | @nohrt4me | 9 hours ago
In reply to @mdramsey48 "@nohrt4me Since FDA approval today actually, it will be easier to get assistance since all the..." + (show)
Profile picture for mdramsey48 @mdramsey48

@nohrt4me Since FDA approval today actually, it will be easier to get assistance since all the trials are over for ET. There are lots of programs out there to help financially and even though hematologists prescribe HU as first line, MPN specialists generally do not unless counts need to come down quickly.

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@mdramsey48 Great! Do you have a lead on any of the programs that will help with cost? Thx!

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mdramsey48 | @mdramsey48 | 4 hours ago
In reply to @nohrt4me "@mdramsey48 Great! Do you have a lead on any of the programs that will help with..." + (show)
Profile picture for nohrt4me (Jean) @nohrt4me

@mdramsey48 Great! Do you have a lead on any of the programs that will help with cost? Thx!

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@nohrt4me if you Google it it will give you the information.

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christina3444 | @christina3444 | 4 hours ago
In reply to @maine "Christina, thanks for mentioning diverticulitis! I'm 76 and find tomatoes are not my friends anymore. Finding..." + (show)
Profile picture for maine @maine

Christina, thanks for mentioning diverticulitis! I'm 76 and find tomatoes are not my friends anymore. Finding rice and stir fry seem most compatible with the digestive system. On HU 500 daily four years now.

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@maine I got the diverticulitis diagnosis after a colonoscopy. I asked the doctor then what to do about it and he told me to eat a lot of fiber. I LOL and told him I was Mexican/Italian and always have eaten more fiber than most. Curiously, my MD never mentioned it to me.
I can’t say the HU has any effect on my system but for heartburn and that is solved with acid reducer and eating an early evening meal.
So far at least tomatoes are OK. I find myself eating a lot more stir fries also. Rice is very easy on the stomach but I try to stick to brown rice.
Old age is just a minefield, I think, when it comes to your gut and aches and pains. I would love to blame the HU but, for me, the fact is it’s a lot of factors coming together. I have just decided the upside of HU is worth it.

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maine | @maine | 2 hours ago
In reply to @christina3444 "@maine I got the diverticulitis diagnosis after a colonoscopy. I asked the doctor then what to..." + (show)
Profile picture for christina3444 @christina3444

@maine I got the diverticulitis diagnosis after a colonoscopy. I asked the doctor then what to do about it and he told me to eat a lot of fiber. I LOL and told him I was Mexican/Italian and always have eaten more fiber than most. Curiously, my MD never mentioned it to me.
I can’t say the HU has any effect on my system but for heartburn and that is solved with acid reducer and eating an early evening meal.
So far at least tomatoes are OK. I find myself eating a lot more stir fries also. Rice is very easy on the stomach but I try to stick to brown rice.
Old age is just a minefield, I think, when it comes to your gut and aches and pains. I would love to blame the HU but, for me, the fact is it’s a lot of factors coming together. I have just decided the upside of HU is worth it.

Jump to this post

@christina3444
You got it, a "minefield"! I was told more fiber too. For a suppliment, I found NuSyllium brand to have no chemicals like the other psyllium stuff on the market. Yes also to bigger noon meal and earlier evening small meal. I have to take a liquid form of HU but aside from fatigue past 1pm it's doable.

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