I definitely lost my hair to hydroxy in 2019 major hair loss and shedding and it was super thin. I did a big chop and stopped hydroxy, I’m on Adakveo now. Love the change ✨💜
Me personally I love it. I receive it once a month every month through IV, at my treatment center. My first treatment was a little rough because it caused more fatigue but that’s why I take it now when I’m getting treated with IV fluids and meds after.
So far I can say managing my crisis on Adakveo has been so much better. I haven’t had any side effects or weird things happen but I can say that you have to stay consistent with it. If you miss a dose you’ll catch a crisis for sure.
But overall I have more energy, more of a routine, I can actually live pretty comfortably on a day to day basis rather without it. My day to day pain would be 6-7 without it
And since it it’s more 3-4 throughout the day.
Yeah I do IV treatments often, I have sickle cell anemia type SS and I’m very chronic. I used to be in the hospital for a week every month before Adakveo and now it’s cut down to every 3 months or so no hospital admissions but I’ll have a crisis.
My treatment center consists of everything they’d do for you in the ER without the repercussions 😂.
I can go there when I feel a crisis or during, if the crisis is bad and they can recommend an admission at a hospital.
My blood count is usually low so I’m prone to blood transfusions as well.
I believe it says hair loss is a side effect on the box and in the fine print that comes with the medication. Yikes. I’m sorry about what you’re experiencing.
I had a similar issue on hydroxyurea. It was like my hair was thining and then would start shedding. I especially noticed it when they tried to up my dose. I am not 100% sure it is the hydroxyurea causing it. Hair loss can be stress, a breakdown in the follicle/hair shaft, or genetics at work.
I went back to taking 2 hydroxyurea a day. I also played around with my hair products. Getting a protein conditioner helped the shedding and black castor oil and olive (any type of hair growth oil) helped with hair growth. There are also products that protect the hair follicle and encourage hair growth.
I’ve also noticed shedding. But no chucks or spots or anything like that. Hair will def come out when I run my fingers through it. I’ve been on hydroxyurea 10 years, on & off (I’m 23). Hair loss is a side effect though.
One of the side effects is temporary loss of hair. I have been on hydroxyurea since 2009; didn’t notice any hair loss, shedding or chunks of hair missing. I’m so sorry for those that have been experiencing such symptoms
I was diagnosed at 1 years old so and stopped blood transfusions at 2 so i’ve been on hydroxy since then and I am now 17 and frankly I can’t say that had happened to me. I have 4c hair so shedding when taking down a hairstyle or after combing out my hair is pretty natural and minimal I have never experienced anything too drastic. However my mom did say that when i was younger, my hair would be a weird-ish copper colour which is unusual as a black child but idk if it relates to the drug, just wanted to throw that out there lol.
I definitely lost my hair to hydroxy in 2019 major hair loss and shedding and it was super thin. I did a big chop and stopped hydroxy, I’m on Adakveo now. Love the change ✨💜
Has the Adakveo been helpful? Have you noticed any differences compared to the hydroxy? Do you feel better on the Adakveo?
Me personally I love it. I receive it once a month every month through IV, at my treatment center. My first treatment was a little rough because it caused more fatigue but that’s why I take it now when I’m getting treated with IV fluids and meds after. So far I can say managing my crisis on Adakveo has been so much better. I haven’t had any side effects or weird things happen but I can say that you have to stay consistent with it. If you miss a dose you’ll catch a crisis for sure. But overall I have more energy, more of a routine, I can actually live pretty comfortably on a day to day basis rather without it. My day to day pain would be 6-7 without it And since it it’s more 3-4 throughout the day.
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Yeah I do IV treatments often, I have sickle cell anemia type SS and I’m very chronic. I used to be in the hospital for a week every month before Adakveo and now it’s cut down to every 3 months or so no hospital admissions but I’ll have a crisis. My treatment center consists of everything they’d do for you in the ER without the repercussions 😂. I can go there when I feel a crisis or during, if the crisis is bad and they can recommend an admission at a hospital. My blood count is usually low so I’m prone to blood transfusions as well.
I believe it says hair loss is a side effect on the box and in the fine print that comes with the medication. Yikes. I’m sorry about what you’re experiencing.
I had a similar issue on hydroxyurea. It was like my hair was thining and then would start shedding. I especially noticed it when they tried to up my dose. I am not 100% sure it is the hydroxyurea causing it. Hair loss can be stress, a breakdown in the follicle/hair shaft, or genetics at work. I went back to taking 2 hydroxyurea a day. I also played around with my hair products. Getting a protein conditioner helped the shedding and black castor oil and olive (any type of hair growth oil) helped with hair growth. There are also products that protect the hair follicle and encourage hair growth.
I’ve also noticed shedding. But no chucks or spots or anything like that. Hair will def come out when I run my fingers through it. I’ve been on hydroxyurea 10 years, on & off (I’m 23). Hair loss is a side effect though.
One of the side effects is temporary loss of hair. I have been on hydroxyurea since 2009; didn’t notice any hair loss, shedding or chunks of hair missing. I’m so sorry for those that have been experiencing such symptoms
I was diagnosed at 1 years old so and stopped blood transfusions at 2 so i’ve been on hydroxy since then and I am now 17 and frankly I can’t say that had happened to me. I have 4c hair so shedding when taking down a hairstyle or after combing out my hair is pretty natural and minimal I have never experienced anything too drastic. However my mom did say that when i was younger, my hair would be a weird-ish copper colour which is unusual as a black child but idk if it relates to the drug, just wanted to throw that out there lol.
I’ve been on it since I was 12 and have had braids/locs ever since. 34 now