Hydrea hair: Hi folks, I've been on 500 mg of... - MPN Voice

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Hydrea hair

Janglo profile image
18 Replies

Hi folks,

I've been on 500 mg of Hydrea daily since 1st March. Apart from the tiredness I've noticed that my hair doesn't feel like my normal hair. I never had fabulous tumbling locks but my hair feels dull, fuzzy and flat. My hairdresser suspects it's the drug. Anyone else experienced this and did you find a solution. I know it's not a major issue but it's annoying me. It feels like someone else's hair

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Janglo profile image
Janglo
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18 Replies
hunter5582 profile image
hunter5582

While I did not experience this issue with HU, you will hear from others that they have experienced alopecia and changes to hair texture.

Fairydust1111 profile image
Fairydust1111

hi. I have been on Hydroxy since February and have noticed a big difference in my hair. Since childhood I have battled with my natural wavy locks and successfully straightened it with GHD’s but since taking Hydroxy, my hair refuses to remain straight and after an hour or so bounces back to it’s normal wavy fuzziness🙄

Janglo profile image
Janglo in reply to Fairydust1111

I feel your pain, I know it's trivial on the scale of things but it's a side effect I could do without. I normally blow dry my hair straight and it lasts about 3 days. Now I wake up every morning looking like Worzel Gummidge !

Fairydust1111 profile image
Fairydust1111 in reply to Janglo

😂😂😂…. Sure if you didn’t laugh…??

HoundSept2022 profile image
HoundSept2022

When I started Hydrea last October, my hair came out in huge quantities - every time I brushed, every time I washed it. Several times I felt I had enough to stuff a hedgehog. Depressing, but not the end of the world. The good news is that my body adjusted over a three month period and by month four the hair loss had reduced to normal. My hair was much thinner, but seemed to be settling down. A trichologist checked my scalp and verified new growth. She said that it was likely that the MPN and possibly the Hydrea were taking a toll on my body, which was basically just giving up on maintaining my hair.She suggested increasing iron-rich foods. I'm vegetarian, but poached eggs & avocado - easy! I increased my Vitamin D supplement and began taking Vit B 12. She recommended I used Tea Tree shampoo and conditioner to stimulate the scalp. I did use these already, but I've also begun using ginger shampoo and conditioner (I switch every 2 - 3 months) and drinking ginger tea, too. I reckon my hair is now in better condition than it has been for years.

I think you should find that once your body adjusts, your hair will improve, but the above are easy things you might want to try, if only for morale.

Good luck.

Exeter21 profile image
Exeter21

Mine went like dry straw & dropped out in handfuls no shampoos or treatments improved it. My hair changed dramatically after coming off Hydroxy. Now on Peg Interferon & hair has grown at roots properly & the dry mess has returned to my usual heathy hair. Hydroxy caused problems with my hair skin& gastric system which is why I stopped it . I have no problem on low dose Interferon now . 👍

Airslie profile image
Airslie in reply to Exeter21

I had exactly the same reaction to HU. Got off and started Peg and it improved and grew back the dr asked me to supplement with HU until the Peg could control things better. I agreed to one 500 pill per week. My hair has fallen out again.. ugh! I’m stopped HU 5 weeks ago and hair is starting to show signs of growth. I told my Dr. Never again and grateful the Peg has kicked in.

Exeter21 profile image
Exeter21 in reply to Airslie

Yes Hydroxy was like poison to my body & yet some tolerate it .

souplover profile image
souplover

I've been on hydroxyurea for about three years. My hair was straight to slightly wavy. Since I'm on hydrea, it's become quite curly. I actually like the curly hair!

Polish1 profile image
Polish1 in reply to souplover

I have been hydroxy for about 18months now no problems but prescribed b12 folate and b1 maybe this has helped

ETME profile image
ETME

Hi Janglo,

I began Hydroxy the day I was diagnosed in May, 2020 and was on it for 2 years. In addition to other debilitating side effects, I definitely noticed a negative change in my texture, shine, and amount of hair. I've now been off Hydroxy for one year and I haven't noticed any improvement. I'm only taking 2 baby aspirin a day. I wonder if whether dehydration is contributing to my dull, dry, fuzzy hair? I don't drink anything but 64 - 90 oz. of water all day. Apparently, dehydration can raise platelet levels. It has also led to (doctor diagnosed) extreme dry eye, skin issues, bladder prolapse, brittle nails, itchy inner ears, etc. I'm not sure if that's from the drug, the ET JAK2, or another dysfunction in my body. It makes me wonder if my organs are shriveling up too! Oh, that's my dry sense of humor. :-) Best to you!

Janglo profile image
Janglo

I knew that I wouldn't be alone with my fuzzy hair 😀. Thanks for all the tips and advice. I'm going to give the tea tree shampoo and conditioner a go and try the ginger too. I really need to increase my water consumption - new motto = less gin, more water !

Janis12 profile image
Janis12

Hi, sorry to learn that you are having hair problems. I have been on hydroxy for 3 years now and I am heart broken about my hair. As we age of course our hair thins we expect this particularly post menopause. My lovely long curly blond hair become frizzy, dull and very thin , slowly but surely. I have tried a variety of shampoos but I don't really know what we expect the shampoo to do. My current one is called Nioxin, which includes a combination of three applications in the one pack. This was recommended by a friend who had been undergoing chemo treatment and the shampoo was suggested to her by the Oncologist. It does seem to give the hair strands more resistance so actually feels thicker and has more body, perhaps long term use of this may promote more healthy hair growth...time will tell. Anyway, I was feeling so self conscious about my hair the other day I rang my hairdresser and asked for help, he came , he cut (short), he styled and I feel much better. What I am cross about is the fact that by being under the care of haematology instead of oncology we seem to miss out on the holistic approach to our condition. Hair loss is a common side effect of hydroxy but this was not even mentioned to me when it was prescribed and every time I discussed this at my telephone appointment I got little or no response. I know some people on this site take a biotin supplement which is good for hair growth but when I researched this the taking of biotin only has a positive effect on hair if you are actually short of it. Hydroxy also effects the skin and nails so it stands to reason that the hair is going to take a hit as well. I purchased the Nioxin from Amazon, not cheap but the best I have tried so far. I am sure others on this site will offer advice as a result of their own experience. Good luck.

Oscarsboy profile image
Oscarsboy in reply to Janis12

I fully agree with all you have said. Dramatic hair change. Every time I mention it at reviews it's as if it literally gets "swept under the carpet " . Haven't tried the biotin but will look into all suggestions mentioned here., tother with tea tree etc.

Shadowperson profile image
Shadowperson

Ive been on Hydroxy Urea for almost 2 years now. I was going bald long before I started using it and I am 76 now. Have not noticed any change in hair loss or texture. My hair continues to exit off the top of my head while the sides and back are holding their own. Sounds like everyone has a different reaction. Good luck folks.

Minu68 profile image
Minu68

hi. I too am on 500 Hydroxy, 1000 twice per week. Hadn’t thought about the change of hair with regards to taking Hydroxy, thought it was related to the menopause. I have had thinning of my hair, but having a head of lots of curly hair it’s easier to manage now n not noticeable luckily for me. But now am contemplating other changes having read your post. My hair has dulled, and feels like it’s different, like you. Interested in anyone else experiencing this

ChillyAsh34 profile image
ChillyAsh34

I had same problem. ,I use a teaspoon of argan hair oil ,a teaspoon of aloe Vera gel ,mix together leave on hair for half hour ,shampoo with argan shampoo and conditioner leaves hair in a very glossy shiney state I do it once a month my hair is long and now in very good condition

Janglo profile image
Janglo

Many thanks Chilly, that's a great idea

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