Hair

[Angeltwin]

Hello I was wondering if anyone taking hydroxy have there hair gone thin ? I have ET calar have been on hydroxy for about 8 months now and my hair has gone really thin is there any think I could take to help with this as it had started to get me down I hope your all well best wishes sandra x

[WileyFrench]

I’ve been on HU just over a year and it’s one of my biggest worries too! I’ve always shed lots of hair when combing it - especially when it’s wet after washing - so I honestly don’t know if it’s any greater now. But to be on the safe side I definitely wash it less often - like every 5 or 6 days instead of every two, and use a dry shampoo if needed between washings.

[Angeltwin in reply to WileyFrench]

Hello willeyfrench thank you for your reply I will take on board what you have said and yes that’s when I am shedding my hair is when it’s wet after washing but I never used too until taking the meds ☹️I will now wash it less and use dry shampo thank you for your Addvice I hope your doing well xx

[fee13]

I'm on interferon & my hair just snapped off! I've noticed I need to comb my hair wet after washing as when it's dry little knots make it impossible to brush/comb without having to rip them out or cut. My secret is washing hair upright or lying in bath, using a good conditioner & comb slides through easily, do not towel dry but press towel on hair to mop up excess water.

I'm trialing a rinse but too early to tell if it's working, can take a couple of months, hair is shiny & moisturized though.

hairbuddha.net/rosemary-hai...

[Angeltwin in reply to fee13]

Thanks fee13 mine is the same I dident used to get knots in my hair until now and that’s why I think I am loosing it by pulling at it to get them out I will be taking your advice thanks for your reply best wishes to you xx

[francesb]

Hi, yes it’s listed as a side effect of Hydroxy. I take a supplement specifically for hair with my consultants consent and I think it helps. Good luck, F.

[Wyebird in reply to francesb]

What supplement is that please?

[francesb in reply to Wyebird]

I take Phillip Kingsley Trichotherapy Tricho Complex. I feel it helps. Good luck.

[Angeltwin in reply to francesb]

Hi francesb thanks for your reply I would love to no what supplement you take please thanks and best wishes to you .x

[francesb in reply to Angeltwin]

I take Phillip Kingsley Trichotherapy Tricho Complex. I feel it helps. Good luck.

[Angeltwin in reply to francesb]

Thank you xx

[lizzieET]

I've been on hydroxy for 5 years and mine started to thin about 6 months ago. My consultant says it's the build up of hydroxy. I wash less often and am looking at a different diet to help. Liz x

[Angeltwin in reply to lizzieET]

Thanks Lizzie et I will take your advice on board wishing you well xx

[Ginnyhelen]

I have ET CALR +ve. I've been on Hydroxycarbamide for 13 years. My hair thinned in first year but has stabilised since.

I went to hairdresser from mynewhair.org and she was great. She advised using Nioxin or Mediceuticals shampoo, etc and I've been using them ever since. They're not cheap but you need very little and they seem to last ages.

I hope that helps!

Good luck!

[Angeltwin in reply to Ginnyhelen]

Thank you very much Ginnyhelen it’s good to no Iam not on my own I will be looking out for them shampoos sending you best wishes xx

[Wyebird]

Yes I’m afraid it’s happened to me. I’ve lost about a 1/3rd. I th k it’s upset me more than the fatigue. I use caffeine rich shampoo. Also Regaine. I know Regaine won’t fight hydroxi but I hope it will counteract the hereditary factor.

[Angeltwin in reply to Wyebird]

Hello wyebird thanks for your reply I will be taking your advice hope your doing well xx

[fee13 in reply to Angeltwin]

Yes I've started using caffeine shampoo & conditioner too and my hair loves it.

[Val_P]

Yes my hair has got a lot thinner. Like others I don’t wash it now as often as I used to. I also had my hair cut very short which has helped to thicken it a bit. On the positive side I no longer get leg or under arm hair. Val

[Angeltwin in reply to Val_P]

Hi val-p thanks for your reply I too am thinking of geting it cut shorter and also I won’t be washing it as often as I did just stocked up on dry shampoo today I love all the advice I am geting from all you lovely people was surprised to see so many I love this group so much best wishes xx

[Spirit123]

Yes my hair is thinning I’m on hydroxy for ET jack 2+. Nothing will help restore it. Once hair follicles die there’s not much chance of it recovering sadly. You can get prescription for wigs. Nhs pay £72 towards wigs. I find them a bit hot to wear in the summer. Depending on your age you may find it worthwhile getting your go refer you for wig . Your case maybe different to mine and your hair may recover. Good luck on your ET journey. I get on with life and try to do as much as I always did. It doesn’t have to be a problem and isn’t life threatening if you are monitored and take the medication .

[Angeltwin in reply to Spirit123]

You are so right spirit123 after all these lovely reply it seems we are all in the same boat and I am so lucky to be hear also a good hair cut n style will do me good thank you so much for your reply hope you well xx

[skipperL]

When I was on Hydroxy my hair got quite thin, but now thankfully I am on Ruxolitinib instead my hair has gone back to almost normal. Perhaps you could enquire about a change of treatment! I have myelofibrosis. All the best

SkipperL

[Angeltwin in reply to skipperL]

Thanks skipperrL maybe your right there is no harm in me asking about my treatment I seem to be getting a lot of different lot of side affects with this medication I don’t like being on it at all but I suppose I shouldn’t grumble it has brought my platelets right down so should be glad of that thank you so much for your reply I hope your in good health xx

[jillydabrat]

Most definitely. I used to have really thick hair but I have noticed how much I have lost every time I wash and dry it. I have noticed that if I use a hair mask, and I mean really plaster it on, then put a warm towel around my head for half an hour. After you wash it out it looks much fuller. Maybe worth a try? I know it doesn’t look so lifeless afterwards as well.

[Angeltwin in reply to jillydabrat]

I will be giving it a try thank you so much jillydabrat and best wishes to you xx

[beetle]

I was on HU for many years and it did not affect my head hair but did affect post pubescent hair! Bizarre! But I do tend to do things differently🤔

[Angeltwin in reply to beetle]

Same with me to beetle thanks for your reply hope your doing well xx

[Loubprv Volunteer]

Ok folks. Hair thinning is an absolute pain. If it’s any comfort, yes mine is going thinner but I still have a reasonable amount after ten years on HU.

The old pubes have taken a bashing ( I now string a few fairy lights between the two that are left to light my way in the dark) as has the hair on my legs. Whooopppeeeeee!

Best advice, wash gently, brush gently with very wide toothed brush and DO NOT colour your hair.

On the bright side you know, if you feel well, or even reasonably well, what’s hair loss?

I’ve felt absolutely bloody awful, and I’ve felt well and I know which is better, even if it is with a bit less hair.

Things could be a heck of a lot worse. Yes I know, it could be better, but let’s start the day with cups three quarters full shall we and thank him up there that we’re all still here and not in some hospital connected to wires and tubes and breathing our last.

I thank God every day for my particular good fortune, and being positive helps an awful lot. I have a friend who was diagnosed with inoperable ovarian cancer last week. She’s 58.

Love

Louise

xx

[Angeltwin in reply to Loubprv]

Hi loubprv thanks for your reply it has made me laugh so much really cheard me up 😂😂 I will be investing in getting a wide tooth comb & brush I hope you are feeling better I love the way you as still so cheery and positive thinking you are so right and yes there is more to life than hair and that is life itself sorry if I came across self centred . So sorry about your friend I should and will be counting my blessings from now on please keep your spirits up as you have lifted mine thank you and take care xx

[Loubprv Volunteer in reply to Angeltwin]

Of course I didn’t think you were self centred !

I have a sun roof on my car and get a heck of a shock when I see my head in the sun - my old pink scalp shines through! But then I’m 65 and quite a few of my friends are going a bit thin as well.

I guess you’re younger then I am so it must be incredibly disheartening for you. Life chucks some rotten apples sometimes but it does help to be positive if you can be. We all need a bit of a moan sometimes.xxxx

[Angeltwin in reply to Loubprv]

Thank you so much you make me smile that’s just me thinking I am self centred not you I must talk to you a lot more as we all need a person like you in our lives who cheers me up no end thanks and best wishes to you xxx

[Loubprv Volunteer in reply to Angeltwin]

Anytime. xx

[Cja1956 in reply to Loubprv]

What a wonderful attitude you have! We all need to keep things in perspective. Thanks for reminding us to focus on the positive. Sorry about your friend.

[JSKly]

Very much so thin hair, disappearing eyebrows while on Hydroxy. All came back while on Ruxolitinib trial. Now on Pegasys and hair loss again.

[Angeltwin in reply to JSKly]

Thanks jskly sorry your not haveing much luck with your hair too xx

[Lifam]

I am aware of that too, i always have thin hair and have been worrying about that since on Hydrea 3 months ago. Other ET support group I've joined, quite a few patients use Bolton (I guess is a supplement) and they had good results about hair getting thicker again.

[Angeltwin in reply to Lifam]

Thanks Lifam it won’t do me no harm to give this a try it’s good to no other people have tried it with similar symptoms as us sending you well wishes xx

[Lifam]

I meant Boltin

[Lifam]

Biotin is the right name. I apologize for giving wrong spelling earlier.

[Cja1956]

I was on hydroxyurea for 11 years. My hair definitely thinned our over the years. My hairdresser even noticed it. I’m 63 now so my hair is dryer than it was so I just wash it once a week. It seems to help.

[Angeltwin in reply to Cja1956]

Hi cja 1956 glad to hear that you no longer take hydroxy did you switch to another medication ? I once a week sounds good to me thanks for your reply and best wishes to you xx

[Cja1956 in reply to Angeltwin]

Thanks. I only just stopped the hydroxy a little over 2 months ago because my hemo thought it might help my anemia. I’ve been taking jakafi for about 8 months but it didn’t help to reduce my platelets so he just started me on anagrelide, as well. I also take baby aspirin. I have ET Jak2 and PV.

I wish you the best on your journey.

Cindy

[Angeltwin in reply to Cja1956]

Aww I hope this time your medication will work with you and you can stay on the one it must be a pain swapping and changing I so-pose we have to see what’s best for us please let me no how you get on with your new meds’ lowering your platelets good luck keep in touch xxx

[Cja1956 in reply to Angeltwin]

Thank you , Angeltwin,

I’m getting a second opinion next week for the first time in 11 years. She is an mpn specialist not too far from me. I do feel a little disloyal to my hematologist but some people on this site convinced me. It should be interesting. I will let you know.

Thanks again for your support.

[Elzbietta]

Hi All. I’ve been on Hydroxurea 500 mg daily for 10 months now. I had a wonderful thick head of hair but think I have lost a third already. Hair follicles can recover after chemo courses but of course the chemo trail for many of us is endless, although gentle so I think I may gradually lose more. I am pleased to read some people stopped losing hair after the first year. I know it’s not the worst thing but is does sadden me quite a lot as I always enjoyed my thick healthy hair. Hopefully better non chemo type treatments will keep appearing in coming years. Best wishes to all, Elzbietta

[Angeltwin in reply to Elzbietta]

Hi Elzbietta you have been on your meds’ around the same time as me . So we still have the hope that all could be back to normal with our hair after 12 months let’s hope so I no exactly why you mean it’s not the end of the world and your not the only one as I fell saddened by hair loss too just another reason for me to feel down about I think Iam just on the start of this journey so hears hoping there could well be new treatment out soon take care and thanks xx

[Stephen399b]

I have ET Jak2+, same story as most. On HU x10/week.

I have used Nioxin shampoo and conditioner which certainly helped, but has got very expensive. Now use Plantur 39 which seems to do as good a job.

Stephen

[Angeltwin in reply to Stephen399b]

Hi Stephen 399b thanks for your reply I have here’d someone else mention this shampoo so yes I will be looking out for it when I go shopping best wishes xx

[Anag]

I’m having the same problem with Anagrelid. I’m usually a hair greek. My hair was very thick and very long. I have to cut it shorter since about a third is gone. Really not funny for anyone. Drinking a half cup on self made organic bone broth is helping. I simmer the bones for 24 hours to get all the minerals and collagen out. This can be stored for 5 days. If put in jars when really hot, then cooled and put in fridge, holds 2 months, therefore I make about 4 Liters at a time. Hope this helps. Anag

[Kinsale]

Hi Angeltwin. I have ET and have been on treatment for the last 3 years - 2 on Hydrea and the last on Pegasys (Pegolated interferon). I have suffered from thinning hair and a kind soul on this forum mentioned the Aveda Invati range of hair products and restorative oils. It has certainly assisted me in regaining some of what I have lost as verified by my hairdresser. I’m in Australia but you can order it online - however heads up - it is expensive.

Cheers

Mark