How long before side effects from Hydrea start?

Posted by arecchie @arecchie, Oct 21 2:52pm

I just finished week two of Hydrea. How long before the side effects, if any, start? I'm trying to gauge when or if I'm getting the side effects.

Also, does anyone know if you lose some hair (thinning out) or a lot of hair? I know it's different for everyone, but a timeline and any help you can share would be appreciated.

Thanks so much.

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When I first started I was taking seven days a week. I felt severe sensitivity to the sun, sore swollen gums and some hair loss. I even had some tiny brown spots in my skin which was told by dermatologist that it’s previous sun damage that the medication makes surface. This was all about a month in. The doctor said to give it time for My body to adjust. I was scared $hit. About two months later I was put to five days a week and the side effects lessened. After seven months I was put on 3X a week and been taking that dosage for over a year now with basically no side effects. I was diagnosed at 56 with PV and almost two years in now. I need phlebotomies about every 8 weeks once my hematocrit hit 45 or over. Platelets steady about 500. Good luck!

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Side effects are possible but not usual. I have been on HU for a year now. I was scared at first but have not had a single problem.

I’m very grateful we have a medication that helps us!

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I started taking Hydrea and had no side effects for 6 months. In 6 months I had very dry skin, sores in my mouth and vision changes. I went to my eye doctor and he said my cornea was swollen. When I left the eye doctor I called my hematologist and he took me off and started me on angralide. I could not take that either. He then put me on Eliquis to thin my blood but knew it would not help with my platelets. I was on that for 3 months and my platelets went to over a million. Now I am on the Besrimi injections and so far things are going good. Platelets are slowing coming down.

I hope you tolerate the hydrea and have no side effects. I was only telling you my experience. Wishing you the best

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@preacherswife1977

I started taking Hydrea and had no side effects for 6 months. In 6 months I had very dry skin, sores in my mouth and vision changes. I went to my eye doctor and he said my cornea was swollen. When I left the eye doctor I called my hematologist and he took me off and started me on angralide. I could not take that either. He then put me on Eliquis to thin my blood but knew it would not help with my platelets. I was on that for 3 months and my platelets went to over a million. Now I am on the Besrimi injections and so far things are going good. Platelets are slowing coming down.

I hope you tolerate the hydrea and have no side effects. I was only telling you my experience. Wishing you the best

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Thank you so very much. This is helpful. Best to you on your Besrimi journey. I've heard good things about it.

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@nypara66

When I first started I was taking seven days a week. I felt severe sensitivity to the sun, sore swollen gums and some hair loss. I even had some tiny brown spots in my skin which was told by dermatologist that it’s previous sun damage that the medication makes surface. This was all about a month in. The doctor said to give it time for My body to adjust. I was scared $hit. About two months later I was put to five days a week and the side effects lessened. After seven months I was put on 3X a week and been taking that dosage for over a year now with basically no side effects. I was diagnosed at 56 with PV and almost two years in now. I need phlebotomies about every 8 weeks once my hematocrit hit 45 or over. Platelets steady about 500. Good luck!

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So glad you figured out the right dosage for you. Glad your platelets are down!

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I have been on 1000 mg for 15 years. I may have some hair thinning, but that is not terrible. I have PV. I do get my phlebotomies and my platelets are around 600. I am now on Methotrexate for my RA. Waiting to see if I have any side affects.

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@dherrman2

I have been on 1000 mg for 15 years. I may have some hair thinning, but that is not terrible. I have PV. I do get my phlebotomies and my platelets are around 600. I am now on Methotrexate for my RA. Waiting to see if I have any side affects.

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Thank you. Best of luck to you in your PV journey.

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I have been taking daily 600mgs of HU for 6 yrs (Droxia formulation). When I started I didn't like how I felt when I took 1000mgs every other day, alternating with 500mgs. I suggested using Droxia so I could have the same dose each day, and my hematologist agreed and said to take 600mgs/day. I'm 77, PMF, JAK2+, with elevated platelets, which have lowered to normal in the past year. Fortunately, I haven't had much trouble tolerating the Droxia.

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@ronegeorge

I have been taking daily 600mgs of HU for 6 yrs (Droxia formulation). When I started I didn't like how I felt when I took 1000mgs every other day, alternating with 500mgs. I suggested using Droxia so I could have the same dose each day, and my hematologist agreed and said to take 600mgs/day. I'm 77, PMF, JAK2+, with elevated platelets, which have lowered to normal in the past year. Fortunately, I haven't had much trouble tolerating the Droxia.

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Thank you for this information. Quite useful as I proceed in my journey.

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How did you feel initially when taking Hydroxyurea, symptoms? Before your dosage was reduced?

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