Hair loss

[ciye]

I am horrified by the amount of hair loss since starting on hydrocarbamide in April. Since this is a life long treatment it will only get worse. Would switching to interferon make any difference any ladies out there for any advice I don't want to be a badly woman.

[Kinsale]

Hi Ciye. I spent 2 years on hydroxycarbamide (hydrea) before transitioning to pegolated interferon and have found that my hair loss particularly on hydrea was slowed then reversed by using Aveta Invarti range of shampoos, conditioners and hair oil (which I use instead of hair gels etc). However be warned this range of hair products are expensive but worth it in my books. Mark

[Wyebird in reply to Kinsale]

I’ve just looked up the product range. Very interesting - thank you

[ciye in reply to Kinsale]

I will certainly look in to that, thank you.

[SuET2017]

Hi I didn’t loose hair with hydroxy but did with interferon. It slowed down after a while and now has settled and has thickened up again.

[lizzziep]

Hi, I lost a bit of hair when on hydroxy, the loss slowed down after a while. When I changed to Anagrelide it did come back a bit but it is still a lot thinner on top than it used to be. Careful styling covers it up.

[Cja1956]

Yes, I’ve lost a lot of hair, as well, on hydroxy. I wash my hair less often now and my partner told me recently I should stop blow-drying my hair because my hair would be all over the sink afterwards. These things have seemed to help. He said my hair looks fuller now in its natural state. I still color my hair, though. Not ready yet to go gray.

[hunter5582 in reply to Cja1956]

Gray is beautiful! You can be a beautiful lady with gray hair whenever you decide you want to!

[Windy51]

I am losing hair also

[hunter5582]

Various and sundry answers since there are various and sundry reactions to the meds. Each of us responds differently. Alopecia is listed as a side effect for both hydroxyurea and PEG-IFN. Not for Ruxolitinib. Based on the very unscientific number of times that people bring this up, I would say it is more common with HU; however more people of on HU. By all means talk to your doc about it, but the only way you will ever really know is to switch meds and see how you react.

Note - there are other reasons you can get alopecia (PV treatment related iron deficiency for me). Alopecia can also affect other hair on your body. I lost a chunk of my eyebrows and some body hair. The hair on top of my head already thinned out. Good thing I don't care about that as I like the buzz cut I sport now.

Hope you find a viable solution to the alopecia soon. Suggest that if it bothers you than that is a good enough reason to switch meds. Patient preferences and priorities matter. It is your body - your choice.

[Joetcalr]

I recommend trying Skin, Hair and Nails tablets from Holland and Barrett. I ran out in the summer and noticed my hair getting thinner. Good luck with it all.

[Pte82]

ciye, one possible cause of your hair loss may be that hydrocarbamide causes magnesium loss resulting in insufficient levels to make thiamine and also vitamin D bioactive. The B1 link discusses different forms of thiamine, nutritionreviews while lengthy has important info near the end about causes for thiamine loss. Always consult with your health care professional before using any supplement.

hairlavie.com/article/thiam....

krispin.com/magnes.html

nootropicsexpert.com/vitami...

academic.oup.com/nutritionr...

[Melanie66]

Hello Ciye..... well hydroxycarbomide is chemotherapy..so it will happen ..apparently if we took it intravenously we would be bald within just a few weeks....I have been taking it for a few years and so far I have not lost hair (other than the usual everyday loss )also I have heard you can have a period of time losing hair but then it will stop and grow back ...so do not think hair loss is permanent ,it seems to move in peaks and troughs ..just like the illness ... hope this helps ..also make some enquiries re: Interferon perhaps more suitable ? Lainie x

[wiskie]

I was on Hydroxy carbamide for 10 years & yes my hair went very thin, but is does settle down. I always use a gentle Herbal shampoo.

[lhammy66]

I lost hair at the temples and top of my head but a year on this has seemingly stabilised and recovered a bit. It’s not as thick as it was but as I had extremely thick hair and most people wouldn’t know it was thinner. I also use wigs and hats for a fun change to my look for occasions. Seems a trendy thing to do these days!

[KentBee]

Hi, I have been on Hydroxycarbamide for three years. My hair has thinned and eye brows, no more shaving legs though!

[ciye in reply to KentBee]

When the consultant mentioned hair loss I didn't think it would be all over, I n some areas that's a plus.

[millycat]

My hair is much dryer , my eyelashes and eyebrows fall out from time to time ,I have really poor eyesight so only normally notice when I have applied mascara to my face !