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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 | Aug 31 7:30am
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 | Aug 31 12:31pm
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 | Aug 31 12:54pm
In reply to @maine "Christina, thanks for mentioning diverticulitis! I'm 76 and find tomatoes are not my friends anymore. Finding..." + (show)
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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 | Aug 31 3:05pm
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.

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@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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hun8ln2026 | @hun8ln2026 | 5 hours ago
In reply to @1995victoria "I would suggest going to webside Leukemia/Lymphoma Society (renamed Blood Cancer United) They have some wonderful..." + (show)
Profile picture for 1995victoria @1995victoria

I would suggest going to webside Leukemia/Lymphoma Society (renamed Blood Cancer United)
They have some wonderful booklets that have information on MPNs (ET is sub-category) they also
have lots of good booklets about medical tests for MPNs
btw MPN is the umbrella for about 4-5 sub-cats) MPN stands for MyeloProliferative Neoplasm......also if you register with Society, they will send you info about virtual lectures and in person conferences all over the USA. I've gone to the conference in NYC in ?March? and they have wonderful/knowledgeable speakers. MPN is rather rare so not all doctors or oncologists know all the details...

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@1995victoria where is the best doctor to see for ET? I've got appointment on September 15th to see a new doctor. I have seen 2 doctors in my area but not happy with them.

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hun8ln2026 | @hun8ln2026 | 4 hours ago

I also have the JAK-2 mutation bn on Hydroxyurea for 3 years, having side effects, seeing another doctor on September 15th. Some people say they have no side effects from taking Hydroxyurea but I have problems. I also have diverticulosis and feel nauseous a lot of the time. I'm hoping this new doctor takes me off Hydroxyurea because I am having more side effects, fatigue, bones hurt, getting harder to walk and stand. I also have osteoporosis which may be another reason for pain in legs. Praying for you and all others that have a blood disease 🙏

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drbart86 | @drbart86 | 2 hours ago

Just ran across this for those that are on/considering HU.
https://insideet.com/et-risks-and-management/

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drbart86 | @drbart86 | 2 hours ago
In reply to @hun8ln2026 "@1995victoria where is the best doctor to see for ET? I've got appointment on September 15th..." + (show)
Profile picture for hun8ln2026 @hun8ln2026

@1995victoria where is the best doctor to see for ET? I've got appointment on September 15th to see a new doctor. I have seen 2 doctors in my area but not happy with them.

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@hun8ln2026 - I would recommend that you look at the following and find one close to you. This is not totally accurate as it still has my "EX" specialist in CO, but he moved to Northwestern earlier this year.
https://www.voicesofmpn.com/mpn-specialist-finder
https://mpncancerconnection.org/mpn-experts/

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