What are most common side effects when starting HU (Hydroxyurea)?

Posted by cdurbin @cdurbin, Jan 15, 2024

What are the side effects most experienced when starting the HU? I'm still trying to decide if I'm going to start it on 1/26/24. My hematologist said we would go over the side effects then but I want to know what most have experienced since they would only report what "could" happen & not what DOES happen. Ex. It's a chemo pill- they usually cause hair loss. Does this apply with the dosages that we would need? After reading other posts, it's sounds like maybe 500 mg is the magic number for the HU dosage.

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lynnebgraham | @lynnebgraham | Aug 15 7:31pm

In reply to @nohrt4me "@janemc These things are fairly common, and most people never know about them unless they're having..." + (show)

@nohrt4me That is really great news. Happy for you, hopefully wont be too long before you can have your surgery. Sending hug from Tassie.

nohrt4me (Jean) | @nohrt4me | Aug 14 9:17am

In reply to @janemc "@nohrt4me If you had to have a pancreatic cyst at all, non-cancerous is great news. Cancer..." + (show)

@janemc These things are fairly common, and most people never know about them unless they're having tests for something else. I'll update my original thread: https://connect.mayoclinic.org/discussion/et-calr-looking-at-heart-surgery/

janemc | @janemc | Aug 14 7:54am

In reply to @nohrt4me "@janemc Thanks. I had an MRI this week to check pancreatic cyst. Blood test and MRI..." + (show)

@nohrt4me

If you had to have a pancreatic cyst at all, non-cancerous is great news. Cancer + pancreas is a bad mix.

If you want to share, please keep us posted on your procedure.

OXOXOXOXO

nohrt4me (Jean) | @nohrt4me | Aug 14 7:03am

In reply to @janemc "@nohrt4me Sending good wishes as you navigate your medical to-do list. Please know we're thinking of..." + (show)

@janemc Thanks. I had an MRI this week to check pancreatic cyst. Blood test and MRI show that it is very unlikely to be cancerous, so that's the last hurdle before cardiac surgery. They are recommending a needle biopsy in the next year out of abundance if caution, but that can be done after surgery and rehab. Have to call cardio office next week and hope to get this over with asap.

janemc | @janemc | Aug 14 5:15am

In reply to @nohrt4me "@jodyjazz Lord, moving house! Makes my hair fall out thinking about it! Good luck in yr..." + (show)

@nohrt4me

Sending good wishes as you navigate your medical to-do list.

Please know we're thinking of you, Jean.

jodyjazz | @jodyjazz | Aug 13 8:13am

In reply to @nohrt4me "@jodyjazz Lord, moving house! Makes my hair fall out thinking about it! Good luck in yr..." + (show)

@nohrt4me
Haha, so true. Thanks!!

nohrt4me (Jean) | @nohrt4me | Aug 13 7:41am

In reply to @jodyjazz "I have been on 500mg of HU for three or four years. I had no noticeable..." + (show)

@jodyjazz Lord, moving house! Makes my hair fall out thinking about it! Good luck in yr new place!

juelie | @juelie | Aug 12 8:27am

I’ve been on HU for 5 years. I’m taking 2 500mgs per day. My platelet count went from 1000 down to the 500s. The 2 side effects that I’ve noticed are dry itchy skin including my scalp and hair loss. The hair loss really freaked me out at first. It was significant but now has leveled off so I don’t think I’ll need a wig anytime soon! Phew. Both of these are minor hassles when you think of the bigger picture. I’m a 71 yo female and still very active. Good luck with your journey.

jodyjazz | @jodyjazz | Aug 12 8:21am

I have been on 500mg of HU for three or four years. I had no noticeable side effects. Recently, I down-sized, (sold a house moved, and bought a house within a week) it was very stressful for me (at 79) and suddenly my hair stated falling out, naturally I blamed the HU and we adjusted my dosage, 1st to Every-other-day and now 5 days a a week. I now believe it was the stress of the move, cause my hair is just fine now. Some people on here report fatigue and joint pain and various other complaints, that are common with old people. As I am one of them, I also have joint pain, tiredness and a constant runny nose. All better than a stroke IMHO!

sanlee7 | @sanlee7 | Aug 11 7:16am

In reply to @59catnip "@sanlee7 Hi, I also have tiredness but the thing that bothers me the most is that..." + (show)

@59catnip My problem is tiredness and my scalp is so dry….the itching is horrible. I have been on the HD for five months in Mesa month I cut it down from seven days a week to every other day just to see if my symptoms got better and they did but also my account went back up to 750,000. So back to seven days a week I guess for a while. But the medicine works because I was down to 560,000.

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