@jodyjazz
Did your oncologist reduce the HU dosage or was that your decision? I'm about to reduce my HU to every other day and will discuss with oncologist next week. He thinks I can just deal with side effects even though quality of life has diminished. He's very happy since all blood counts are low normal and that's all he wants to see.
@mw2023
First, I just quit, and didn't ask anybody, for one week, then I got scared of a stroke, so negotiated the evo day schedule.
New blood work suggest a rise in platelets to 441, which they did not see as alarming. I go back in May to check again.
It is your life and your body, but! For me the risk of having a stroke and NOT dying is horrifying. So I will put up with hair loss if need be I guess.
@jodyjazz
I had same throat symptoms and reflux. Decided to try gluten-free diet.
Those symptoms became less in 1 week. It's been almost a year on gluten-free diet and symptoms have never returned.
@jodyjazz
Did your oncologist reduce the HU dosage or was that your decision? I'm about to reduce my HU to every other day and will discuss with oncologist next week. He thinks I can just deal with side effects even though quality of life has diminished. He's very happy since all blood counts are low normal and that's all he wants to see.
@mw2023 My Doctor reduced my dosage plates are 243 she said we have room to play. If my numbers start up we will add 1 pill at a time . It has been 3 weeks will go for blood work next week guess we will see.
@mw2023 My Doctor reduced my dosage plates are 243 she said we have room to play. If my numbers start up we will add 1 pill at a time . It has been 3 weeks will go for blood work next week guess we will see.
I have been on Hu for about a month now. Have had one update on labs. I noticed my WBC declined. I guess this is why they say you are more susceptible to infection/ colds etc. My question is, does this level out? Do you review with your doctor at each check in?
@dewz13 I’m curious as well. I’ve been on Hydrea for 6 weeks and my wbc count has dropped from 6.4 to 4.0. I see Dr next week and will get his thoughts.
@janemc This is very interesting to me. I went to an allergist due to constant post-nasal-drip and the annoying constant throat-clearing. He said I was not allergic to anything..........great, and that I had non-allergic rhinitis. Never thought about the HU. And never had this issue till started taking it. I just reduced my dose of HU to every other day 500 mg and my hair stopped falling out, but will try to OTC allergy pill again. Thanks. I know we all are different, and have different reactions but what the heck?/
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@mw2023
First, I just quit, and didn't ask anybody, for one week, then I got scared of a stroke, so negotiated the evo day schedule.
New blood work suggest a rise in platelets to 441, which they did not see as alarming. I go back in May to check again.
It is your life and your body, but! For me the risk of having a stroke and NOT dying is horrifying. So I will put up with hair loss if need be I guess.
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5 Reactions@mw2023 Thanks will give that a try.
@mw2023 My Doctor reduced my dosage plates are 243 she said we have room to play. If my numbers start up we will add 1 pill at a time . It has been 3 weeks will go for blood work next week guess we will see.
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1 Reaction@vickieannb57 the above comment was from @vickieannb57 not @mw2023. Sorry if that confused anyone
@dewz13 I’m curious as well. I’ve been on Hydrea for 6 weeks and my wbc count has dropped from 6.4 to 4.0. I see Dr next week and will get his thoughts.
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1 Reaction@jodyjazz itchy nose and throat and post nasal drip since starting HU in Oct’25 for ET JAK2. I’m using Astepro with success ! Worth a try.
I will certainly try Astepro............thanks!!