How fast do you start to feel hydroxyurea symptoms?

Posted by mlmk0601 @mlmk0601, Mar 16 1:14pm

Im 64 and have been diagnosed with ET since 2022. My platelets are now at 768,000. I Will be starting hydroxyurea 1 per every other day this coming Monday. I was wondering your experiences on how soon did you start to feel the onset of symptoms ? I’m so scared. I cried all the way home after picking up the prescription and then some.. not sure if I should have someone stay with me in the first week just in case I have a bad reaction.

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I am 69 years old and I recently had a bone marrow biopsy because of a high platelet count (750). I started taking HU three days ago. So far, no symptoms.
I really appreciate all the comments and experiences. It has eased my worries about the drug.

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Update: since I started this post, I switch hematologist and been on Hydroxyurea daily 500 mg. After a month my platelets dropped to 487K. I retest at the end of June. Hoping I can do every other day. Fingers crossed. I did want to ask has anyone had any impact to any pancreas enzymes or tumor markers like CA-19 ?

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@mikemp

I am 69 years old and I recently had a bone marrow biopsy because of a high platelet count (750). I started taking HU three days ago. So far, no symptoms.
I really appreciate all the comments and experiences. It has eased my worries about the drug.

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Welcome to Connect, @mikemp. It can really help alleviate fears when you can talk with someone who is going through a similar diagnosis. I’m so glad you found us! Were you having any symptoms that led to the diagnosis or was this found through routine blood work?

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@mikemp

I am 69 years old and I recently had a bone marrow biopsy because of a high platelet count (750). I started taking HU three days ago. So far, no symptoms.
I really appreciate all the comments and experiences. It has eased my worries about the drug.

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I never have had any side effects.

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@loribmt

Welcome to Connect, @mikemp. It can really help alleviate fears when you can talk with someone who is going through a similar diagnosis. I’m so glad you found us! Were you having any symptoms that led to the diagnosis or was this found through routine blood work?

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Routine blood work. Platelet count had been going up slightly over the past few years. I had absolutely no symptoms.

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I only had some side effects the first year on HU with gut issues. Finally subsided after year

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I take 500 mg daily and have absolutely no symptoms in the 2 years I've been on HU. Don't look for symptoms just go on with your normal life.

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I've been taking 600mgs of hydroxyurea (Droxia formulation) daily for myelofibrosis for the past 6 yrs. No side effects. Perhaps I've had extra fatigue, but it is hard to distinguish where it comes from. I think the HU has lowered my platelets during the 6 yrs, and I have been in the normal range the past 6 months. I use the lid of an empty medicine bottle (which can be turned upside down) so I don't have to touch the capsule--I just put the capsule into the lid and then tip the lid so the capsule falls into my mouth. So far I haven't dropped any of the capsules. I also think that the HU has helped to prevent enlargement of my spleen. I'm JAK2 positive, and my NGS test also was positive for mutations of ASXL1, TET2, and RUNX1. I'm 77.

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@ronegeorge

I've been taking 600mgs of hydroxyurea (Droxia formulation) daily for myelofibrosis for the past 6 yrs. No side effects. Perhaps I've had extra fatigue, but it is hard to distinguish where it comes from. I think the HU has lowered my platelets during the 6 yrs, and I have been in the normal range the past 6 months. I use the lid of an empty medicine bottle (which can be turned upside down) so I don't have to touch the capsule--I just put the capsule into the lid and then tip the lid so the capsule falls into my mouth. So far I haven't dropped any of the capsules. I also think that the HU has helped to prevent enlargement of my spleen. I'm JAK2 positive, and my NGS test also was positive for mutations of ASXL1, TET2, and RUNX1. I'm 77.

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Welcome to Connect, @ronegeorge. Thank you for sharing your encouraging experience with using Hydroxyurea to control your myelofibrosis. It sounds like the HU is preventing other potential side effects from your condition as well. It’s stories like yours that can be so inspirational for anyone who is hesitant to take these valuable treatments.
How often do you have repeat blood work?

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Hello when I began taking 7X a week I had tooth pain and extreme sensitivity to the sun. I also had tiny brown spots on my skin. Dermatologist said that this medication brings up precious sun damage. I also had some hair thinning. Happy to say after six months and dosage being lowered to 3X a week the symptoms have lessened greatly. I’m taking that dosage now for about a year. I have PV and am JAK2 positive.

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