1. < Blood Cancers & Disorders
Profile picture for mumblipeg

Will my Hydroxyurea dose ever be reduced? Does this happen with ET?

Posted by mumblipeg @mumblipeg, Jul 16 11:23pm

I was diagnosed in March 2025 with JAK2, TET2 and ASXL1 mutations after a bone marrow biopsy. I have had very high platelets but Hydroxyurea has reduced them from 12000 to 370. I am hoping that my daily dose of 500mg HU will be reduced soon, too. Does this happen? I have symptoms of peripheral neuropathy and hair loss along with extreme afternoon fatigue and weight gain. I'd like to get some normalcy back. Is there hope that Hydroxy might be reduced since I seem to be leveling in a normal platelet range. Does this ever happen?

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Profile picture for nohrt4me (Jean)
nohrt4me (Jean) | @nohrt4me | Jul 17 6:37am

Yes, HU is often adjusted after six months to a year. Usually the dose goes up, but not unheard of for doses to go down. If you have six-month appointments, that would be a good time to ask your doc about his dosing strategies.

REPLY
Profile picture for drbart86
drbart86 | @drbart86 | Jul 17 11:28am

As everybody is different, reactions cannot be generalized. I have seen some posts that have been on HU for many years at mid- to low-doses and it was very effective. In my case I had to keep increasing the dose over about 4-5 years until I was at 2,000 mg/d and at that point I ended up having significant issues with it. I have since switched to Jakafi and it has kept platelets in a slightly elevated (but acceptable) range. Key is to stay in touch with the doc and follow what what your blood tells you -
Good luck and stay positive - it is key!!!

REPLY
Profile picture for guitarjane74
guitarjane74 | @guitarjane74 | Jul 17 12:19pm

Thank you for your post I was wondering if you felt better on the Jakafi? And I'm feeling that it would be better for your body than the Hydrea which is a chemo pill... I am on the Hydrea myself and I am going to ask my doctor about switching over again I just don't like the fact of being on chemo...Thx and I wish you the best

REPLY
Profile picture for drbart86
drbart86 | @drbart86 | Jul 17 2:11pm

I'm not really sure if I feel better on Jakafi vs HU; other than when I crashed on HU. The crash cause all blood cells (RBC, WBC, platelets, etc) to fall well below the normal range, lots of fatigue abdominal pain, etc. "Best" thing was I lost about 30 pounds in 30 days (I really did not need to loose the weight, so not a good thing; and when you loose it that fast at least 25+% is actually muscle loss). Many of the associated symptoms associated with ET are progressively worsening, slowly and none to really debilitating - I still walk my dogs 5-8 miles most days and ski in the winters. The biggest argument one might make about making a switch if HU is not an issue is the cost - Jakafi is really high and depending on your insurance, it could be a financial strain. Best thing is to make sure you have the best info and are comfortable with your doc - get a 2nd opinion, they really do not mind. When I did it really only confirmed that my first Dr was a good one.

REPLY
1 reply
Profile picture for mumblipeg
mumblipeg | @mumblipeg | Jul 17 7:34pm
In reply to @drbart86 "I'm not really sure if I feel better on Jakafi vs HU; other than when I..." + (show)
Profile picture for drbart86 @drbart86

I'm not really sure if I feel better on Jakafi vs HU; other than when I crashed on HU. The crash cause all blood cells (RBC, WBC, platelets, etc) to fall well below the normal range, lots of fatigue abdominal pain, etc. "Best" thing was I lost about 30 pounds in 30 days (I really did not need to loose the weight, so not a good thing; and when you loose it that fast at least 25+% is actually muscle loss). Many of the associated symptoms associated with ET are progressively worsening, slowly and none to really debilitating - I still walk my dogs 5-8 miles most days and ski in the winters. The biggest argument one might make about making a switch if HU is not an issue is the cost - Jakafi is really high and depending on your insurance, it could be a financial strain. Best thing is to make sure you have the best info and are comfortable with your doc - get a 2nd opinion, they really do not mind. When I did it really only confirmed that my first Dr was a good one.

Jump to this post

Good information! I think I’m sliding down with HU and worried about waiting for a recheck. Your experience tells me that If better not wait! Thank you! Jakifi probably isn’t an option for me with my Autoimmune problems… we’ll see. Thanks! Best to you!

REPLY
Please sign in or register to post a reply.