Hydroxyurea hair loss

[shiela23]

Who else experienced hair loss have ET?

[bordeauxgirl]

I have PV but have also noticed Hair loss since being on Hydroxycarbamide. , my Haematologist just said 'buy a wig !' Charming Eh?

[hunter5582 in reply to bordeauxgirl]

Rx for said haematologist = DopeSlap qd - apply to back of head PRN.

[bordeauxgirl in reply to hunter5582]

I would love to try that prescription,

[dd21 in reply to bordeauxgirl]

Greetings from Jersey to you Bordeaux Girl. David

[bordeauxgirl in reply to dd21]

Hi David I bet you can guess where I am living ? lol

[Whitehair51]

When I was taking 1500 mg a day of HU I lost about a third of my hair, a few months later I was down to 500 mg and the hair loss stopped. I'm glad I have thick hair!

[hunter5582]

Alopecia is a well known HU adverse effect. Plenty of people have experienced it. Sorry to hear you are on the list.

[skipperL]

My hair got quite thin when I was on Hydroxy - I am now on Ruxolitinib and it’s back to its normal thickness thank goodness! SkipperL

[shiela23 in reply to skipperL]

What is ruxolitinib??? Is it treatment for ET as well???

[shiela23 in reply to skipperL]

What country you are???

[skipperL in reply to shiela23]

I have MF now and am in UK

[shiela23 in reply to skipperL]

Is MF different from ET??

[hunter5582 in reply to shiela23]

MF is myelofibrosis. It is another type of MPN characterized by fibrotic damage to the bone marrow. It can be primary or result of progression from PV or more rarely ET. Someone with MF can still present with thrombocytosis.

Ruxolitinib (Jakafi, Jakavi) is JAK2 inhibitor authorized to use in treating MF and PV. It is also used off-label for ET. Note that in the USA hydroxyurea is not FDA approved for ET either. There are no officially FDA approved drugs for ET.

[skipperL in reply to shiela23]

A progression (deterioration) of an MPN

[Wyebird]

Yes I’ve lost about a 1/3rd. I now have my hair permed. It makes it look as if I have more hair.

[shiela23 in reply to Wyebird]

How long you’ve been taking hydroxyurea??? Is it gonna losses all my hair?

[Wyebird]

You will never lose all of your hair. After 6 years I was taking 17 hu and 9 anagrelide a week. A few months ago I started PEG.

[Wyebird]

No one else has noticed my hair loss only me and my Hairdresser xxx

[shiela23 in reply to Wyebird]

Why did you change to PEG?

[Wyebird in reply to shiela23]

Was feeling worse and worse. Was getting from bed to sofa so I asked about it. They said ok meanwhile I found out that I was feeling so bad because of by very low Vit D. However I continued to persue Peg whilst they were willing to give it to me

[ChillyAsh34]

I am on hydroxycarbamide my hair which is middle of back in length became very dry brittle snapping off and losing loads I have discovered shampoo and separate conditioner at BM s paid about £1-50 per bottle it is called onovia intense coconut water it has put my hair into a fabulous condition no more hair loss no snapping off just normal hair loss after 2 washes hope this helps someone especially you young ones

[shiela23 in reply to ChillyAsh34]

Thank you for replying… im in Canada where can i buy that ? What brand called?

[ChillyAsh34 in reply to shiela23]

The brand is anovia not sure where in Canada you get it ,Google onovia intense hydration coconut water I believe amazon have it