Has anyone else developed curly hair whilst taking Hydroxy! I've always had a wave in my hair but now my hair is dry, frizzy and very curly. I straighten it, go outside and it puffs out like a mushroom. And if there's moisture in the air, it turns to scruffy curls 😳 It's a nightmare.
Anyone got any tips on controlling my mop?
Changes to hair and skin are known to be associated with HU. It may or may not resolve if you discontinue the HU. lls.org/drug/hydroxyurea#:~....
Sorry I can't recommend product to manage it. My hair was all falling out anyway so I buzzed it all off. No more hat head, frizzy hair, blow-dryers, etc. I love it!
Hope you find solutions that work for you.
Mine went curly when my dose was quite high, but I really liked it.
Hi Cakeface, very frustrating for you. You could ask your hairdresser if she/he can recommend any products to help. Maz
Mine is quite the opposite , from dark thickish hair, I have now pale brown very ,very thin hair that shows right through to my scalp. I hate it, I ask the Hemo doc if anything that will help restore my hair even just some stronger strands, he just said ' go buy a wig'
I'm very sorry to hear that. Maybe I should be a more thankful!And that's really awful and very unprofessional of your doctor to be so uncaring
My hairdresser talks about chemo curls, and it sounds like the same sort of thing. Good product called Frizzease helps. A small squirt on wet hair, leave it for 2 mins and rinse. Hope it helps.
- it is no help at all ! Need real oil to have any hope of containing frizz in my case!
Hi yes mine too! I have the same problem. Long straight hair but new growth is curly and fuzzy! I have a glossing at the hairdresser, which coats the hair and gives it shine. That definitely helps 😀
Yes yes yes. And I hate it. I have a short cut because I lost a lot of hair . And the rest is curly
So sorry that you've lost hair. From what I've read in my replies it is a possibility, which is far worse than a scruffy mop
I posted awhile ago, asking if anyone else developed curly hair while taking hydroxyurea. I got a number of replies saying they now have curly hair, too. I’m sorry yours is difficult to manage. I’m very lucky. Not only do I have curls for the first time in my life, they are quite manageable and I’m very happy about it. Hope you’ll get advice that helps you. I think a hairdresser’s input would be a good start. Good luck!
Hi Cakeface, I used to have naturally wavy hair (and didn't mind it) until I bought a hog hair bristle brush, which seems to have eliminated the waves. On HU I have also had a problem with my hair being a bit uncontrollable until I read here on the forum about a brand of herbal shampoo and conditioner (thank you x1000 to the person who mentioned it!), which is brilliant! I don't need/use the conditioner. I don't know whether I can state the brand name on this forum and it is a bit expensive but worth every penny (centime, in my case!). Message me if you would like the name of the shampoo. Best wishes.
I have long hair it went dry and curly with hydroxycarbamide I use ,intensive hydration coconut water and conditioner by anovia 99 p a large bottle sold by home bargains and BM s one wash and it gave my hair a lot of moisture
The quality and quantity of my hair changed when I started on HU...my stylist commented that it was getting curly. I also started noticing that it was thinner-very humbling. Something else that has become very painful and irritating on HU, has been the soft tissue degradation...painful mouth sores, as well other places. I'm wondering 🤔, chemo burn in the lower regions as well as a break down of the tissue? Anyone else have this problem? My oncologist never mentioned this possible side effect.
From my replied it appears that many have thinning hair, which is obviously much worse than my moan. Although I am losing a lot of hair as my ferritin has dropped consistently over the last year from normal range to 9.I don't have mouth sores but I have a permanent burning/tingling sensation in my mouth that I too blame HU for, along with a burning sensation in my back and burning/tingling in my feet and thighs. My consultant does think that the HU is the problem and he's doing some blood tests next week checking B12/folate and autoantibodies for connective tissue
Maybe you should have a chat with your oncologist
I’ve always had curly hair, and lots of it. Since starting Hydroxy it has thinned a bit, which in my case has made it more manageable, I’m very happy with it luckily. It hasn’t gotten any curlier. Curly hair does tend to be drier, no idea why, and any moisture in the air will make it curl/frizz more. I can predict rain with my hair lol.
Products that contain coconut/argon/olive oils are generally good, ones that contain alcohol not so much. I’ve never found frizz ease any good for my type of hair, but a lot of people love it. I condition twice after washing my hair, and when the weather is damp a leave in conditioner can help avoid my hair shrinking up n frizzing.
I make many herbal treatments and there is a simple hair tonic that helps the scalp and improves the robustness of the hair. Take fresh Rosemary and infuse it folk method style in organic olive or avocado oil. You can use sweet almond oil as well. Whatever you like for 6 weeks. Pack the jar almost full and pour the oil. Strain it and put it in a dark glass pump bottle after a minimum of six weeks. Use it once a week or twice a month. Run a pump through your hands and the oil into your hair not so it’s wet but just a bit oily. Sleep with it if you can then wash your hair and rinse it with camomile infused or rosemary water. You don’t have to do the rinse but it’s lovely. You can just shampoo and condition as normal. My hair is dyed and wavy, much thinner snd not at all what it was but it’s better now and I take 500 X 2 five days a week and 500 x1 2 days. We will reduce it in December but it works to keep me stable. My skin is good as a result of salves and balms I make and when I’m really good with my diet and exercise as well as trauma work I fair much better and so does my skin and hair. Hope that helps.
Bless you hope you can find a lovely product. If you can, perhaps pop into a hair salon like Richard John or similar , they are so lovely and I think would give you free advice and a trial product a lovely team, who are always welcoming.
I like to colour mine, but everything comes out with an orange glow, even ash!🤷♀️
Yes l find l have to regularly moisturiser my hair 3 times a week and wear it up with lovley hair accessories especially during winter.Good luck
Adiewon
It'll be a hat where possible 😆 I use keratin products and leave in oils etc. Nothing helps. I'll just have to be thankful for what I've got
Yes, my hair is getting curlier and thinner by the year ( been on HU for 18 years) I quite like the curls, but not the thinning and frizzing after washing. Hope you can find a good product..I just put up with mine !
I used to think I was imagining that my hair was going curly as it seemed to be such a bizarre drug side effect. However since stopping HU and taking Jakafi instead my hair has considerably straightened. I also lost most of my secondary hair (underarms etc) while on HU but I have a thick head of hair and it didn’t seem to thin that much. Secondary hair has not come back after Jakafi for 7 years. I hope you find something to tame your hair if it is bothering you.
Hi there!I have naturally CURLY hair and use CANTU. I have the shampoo, conditioner, leave in conditioner and loads of moisture twist and lock gel. It's amazing stuff and I even wash my hair with ONLY CONDITIONER which takes away any fizz and dryness. Watch You Tube Cantu products!!! They are not expensive either.
Tell me about it!! I am on Hydroxy. Mine is exact same and drives me nuts. I would wash it, style it straight and within a few hours it would look like I'd been plugged in at the socket. It has also gone quite white and I looked just like Einstein!! I was SO down about it. I have been trying every product under the sun for two years. What seems to work best is washing it with everyday gentle shampoo, then smothering it with African Pride Sheer Butter Moisture Intense Leave in Conditioner. I leave it for five minutes, then rinse my hair to get excess off but leave a bit in. Then style it and it is much improved. You can also use this conditioner on dry hair. You can go with the curls and get a wet look for a different look. I would say keep experimenting with lots of different things. Everyone has different hair and I'm sure there will be some product out there that will help. Just don't give up. 😉
I too have tried alsorts. I've a cupboard full of partly used items. I'm pretty much the same with the grey/white hair but put it down to age being 61. I didn't even realize this until I ended up with inches of natural colour during lockdown! I used to pay for curls in the 80's but unfortunately my preference is for a straight, neat style.My plan is to try some products for African hair types 🤞
Yes I've got a lot of half used items too!! Lol. I took the plunge a couple of months ago, and used an ash blonde semi colour on my hair. I was really scared in case all my hair fell out!! but it didn't and I really like the effect, as it has toned the white down. I know you are not supposed to use colour on thinning hair and if on chemo, but I used a gentle colour and it was ok on mine. I hope you find something that works for you 🤞🍀
My natural colour is dark ash blonde and I still have it coloured at the salon. I had a reply from someone who said it left her hair with an orange hue and mine is the same! I was blaming the colourist, thinking she'd used a golden blonde 🙀
Ah yes, I dreaded it coming out a yellow or orange colour 😬 As the dark ash blonde shade was ok for me, I think I will stick to the same make and colour!! 😊
My hair also got very curly. I've decided to embrace the new look - and I love it! It took me a couple of years to realize that it's connected to the hydroxyurea.
And another ! After 30 months mine is not so much "curls" as each hair wanting to do its own thing - which results in frizz. I use a very thick oily conditioner which I only half rinse off plus argan oil - and it still looks dry! I now either blow dry as before and then clip the sides to stop frizz around face, or brush through and leave to dry naturally which nearly gives curls !
I have dry frizzy hair with PV. I only wash my hair once a week and use a deep hydration hair mask every time. This has helped my hair.
My hair became Curly and dry due to iron deficiency.
I knew it. My hemotologist/oncologist said he had never heard of hair turning curly from HU. I had stick straight slightly oily hair. After 13 years on HU, I have some loose, gentle waves around my face. My hair is long, so the waves work out well.
Hydroxy 
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Hydroxy and hoarseness
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