MPN Voice
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Hair loss and hydroxy

I know this should be the least of my concerns about taking hydroxyurea, but .... What are others’ experiences with hair loss, taking 1 capsule per day? I’m crossing all fingers that that dosage doesn’t cause hair to fall out, but that may be just wishful thinking.

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No it will be ok. Take good care ,in the sun etc,use good products to wash it..I am on 3 2 2 3 per day.....my hair is blonde and fine ,always has been.Only difference is it is drier but just as curly if not more than normal.Nails tho are not good!! There are products to help that problem that do work,esp the horse ones...hair too ! Don't worry .Good Luck. .Sally

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Thanks Sally. The one thing I have is good hair; it would be great if that’s not taken away. I know it’s vain and stupid but in bad times sometimes the small things help. Good tip about the nails.

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It is not vain or stupid,I know how you feel,I was the same,proud of hair and my looks too...that is vain,but then I had carcinoma on my face 2 yrs ago,brilliant surgeon removed it and great care afterwards,Fr National Health..I was told that the Hydroxy was the cause...so do protect your skin in the sun,not just summer ,winter also,it's the uv light now that is a problem. I have fine scars now on left of face,I am terribly aware of,that takes care of vanity!!! We have our lives that's the main thing and Hydrea keeps us that way .S

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I keep trying to think of the "we have our lives" part as the benefit of HU. I'm glad you had good surgery for your skin cancer, but sorry it happened. You're so right about the sun; I'm becoming a hat-wearer, and have got 30 sunscreen now!

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Thanks Sally. The one thing I have is good hair; it would be great if that’s not taken away. I know it’s vain and stupid but in bad times sometimes the small things help. Good tip about the nails.

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I'm on Hydroxycarbamide, been on it since May. Was only taking 1 a day Monday to Friday, consultant increased dose 2 weeks ago, increased to 2 a day Monday to Friday. My hair is falling out, my nails seem to be fine

Linda

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Ahh, sorry to hear that about your hair. Did the increased dosage cause the change, do you think?

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Yes it has since the increase. I was told once my body settles with the meds it will settle. Does your body ever settle with this medication

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I was taking hydro for 2 months ( one tablet a day) no problem with hair at all.

I am sure you will be fine .

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That’s good to hear. And interesting. How were you able to stop taking if after 2 months? I thought it had to be taken forever, but maybe not??

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Hi ,

it is also mystery for me.

Well I have been told that because of my age (41) I can’t take hydro for long time. My hemo told me that I will be on hydro until my platelets will go to 600. ( 1200 before treatment) . And after 2 months I stopped taking hydro. My hemo said we need to wait 4 weeks for another blood test. And as expected my platelets went to 1000 level and I as put straight on pegasys.

I just don’t understand why I was put on hydro in the beginning......why I wasn’t on pegasys straight away.

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Hi wileyfrench, been on hydrea 4 10yrs,been on different dosages in that time, highest being 5×500mg a day at 1 point! Now on 3 a day,never ad problem wiv my hair.woz thick at start ov treatment,just as thick after 10yrs if not thicker! As others ave sed we are still here wiv loved ones even tho at times the terrible symptoms will sometimes get us down.take care & try not 2 worry about something that in all probability won't effect u.tico

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5 x500mg a day wow! it puts my 17 a week plus 7 anangrelide into insignificance.

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Thanks Tico. I do try not to worry - about all of it. Better at that some days than others I must say!

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no, your hair will not fall out!

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Felt exactly the same way when I was prescribed it but happy to say that I have been on hydroxy since April 2017 and no hair changes to report. Most important to use very high sun protection. I was told by consultant but I have alao noticed that even with factor 50 I am much more aware of my skin being thinner and needing reapplying a lot more. All the best

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You’re the second person to say sunscreen 50, so it’s definitely on my shopping list!

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Unfortunately I have hair loss taking Hu I think it is quite a common side effect from reading other groups. A lot of people take Biotin I have tried this but can't say it helped.

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Well that is unfortunate. Can I ask what your HU dosage is?

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1000mg per day

I also use a 50 sunscreen and I stay out of the sun

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Wish I had thick hair! Don’t think the Hydroxy makes any difference. Hat wearing on the other hand .......!!!

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No HU doesn't cause hair loss at all - for many years I was on 3 capsules a day (still do some days) and still plenty of hair!! As others said nails do suffer a bit so just take care of them and most important is the careful in sun just use SPF50 all the time.

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That’s great about your hair! And wow - sunscreen 50. I thought 30 was high. Guess I’d better get new stuff. 😊

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By the time I stopped taking HU I was on 4 capsules per day. I have always had very thick hair and HU did not affect that in 17 years. However I have wavy hair and HU was making it curlier. Now I am taking Ruxolitinib it has gone much straighter. Bizarre!

Best wishes, Jan

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Hi beetle, saw ur reply 2 wileyfrench about hu & hair loss,interested 2 c u were on hu 4 17yrs, may i ask wat ur condition is? & why r u now on ruxo as i'm fairly new to this site even tho i've ad et jak2 4 10yrs.at my highest dosage woz taking 5 hu a day,now on 3 a day.best wishes, tico

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Hello Tico. I was diagnosed in 1994 with ET and platelets over a million. Treatment parameters were different in those days and as the internet was still in its infancy it was difficult to find any information. My platelets didn’t stay in normal range and I needed more and more HU to keep them as under control as possible. Unfortunately I am one of the cases of ET that progressed to MF so I have been on Ruxolitinib for five years to treat the MF. In case you think my maths are a bit off I was on busulphan for a couple of years. That drug is very rarely used nowadays as there are much safer alternatives to use now. I hope you continue to do well on HU

Best wishes. Jan

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Hi jan,thanx 4 replying,i woz similar 2 u,diagnosed well ova the 1000 mark plus jak2. 1 ov my haemo's joked wen he sees me my plateles r in the penthouse suite (way too high) or in the basement (way too low) ad tia in 1997 which led 2 my diagnosis then ad more significant stroke in 2015 (platelets off the scale) having lot ov symptoms more in last 12 months,sleeping constantly & bloodwork fluctuating wildly.haemo sent me 4 auto-antibodies last visit as well as normal fbc's u/e's l/f/ ts still waiting 2 tall 2 haemo as appointment cancelled as whole hospital it system went down 4 2days,got 2wait till 5th september 4 next appointment! I wish u well on ur journey jan & wish u all the very best,& will be following u as we all walk along this path.tina.(tico).x

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Hi Tina - were you taking an anti-coagulant or thinner like clopidogrel after you TIA, or not till after your bigger stroke?

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No aspirin in begining wiv hu,didn't prevent 2015 stroke. Put straght on clopidogrel while in hospital. Bws 2u wiley tina.

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So just so I understand, you were taking HU and aspirin after your TIA and you still had the larger stroke in 2015, and that’s when you went on Clopidigrel? Thanks a lot Tina.

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Yes but i've ad a lot ov problems wiv haemo's keeping my counts stable & i guess i woz just a bit unluckly but the main thing is i am still here & kicking! Got a tattoo done in latin,( si delaspa ero regergum) which translates as, If i fall i will arise! Wen i feel down i glance at it & remember,also wiley like beetle sed earlier yrs ago wen u were diagnosed their wasn't a lot of information about,i've been diagnosed going on 11yrs & like many here know i've ad it longer & wish 2 god i ad found this wonderful site in my darkest day's! Bws tina x.

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Yes this forum is wonderful. I’m hoping we’ll all ba around and kicking for a LONG time!

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Well that’s potentially great hair news! Like Wyebird, I’m wondering why the med switch.

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See above reply to Tico

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I’m on 17 capsules a week. I don’t think my hair actually dropped out but certainly got about a third thinner. I had fine hair to start with. Don’t think one capsule a day with me made any difference. Now I was my hair with caffeine shampoo. I also use regaine( used to halt genetic hair loss. ).

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Caffeine shampoo. That’s a new one to me!

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Plantur

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I started taking 1 hu per day in March and my biggest fear was losing my hair. It actually still is. I am afraid that losing more than usual will show up as bald spots or receding hair line, but so far it hasn’t. But I must admit, I am losing it much more than usual. I think everyone is different & I probably won’t stop worrying till at least a year has passed because then I’ll know for sure.

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It seems like everyone is different but if you haven’t noticed bare spots and you’ve been taking it since March, maybe that’s a very good sign!

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Hh bjay22, wileyfrench is right its a gud sign,considering u been taking it since march, with a lot ov medications ur more likely to get the harsher sxmptoms in the earlier days.try not 2 worry & enjoy being here & diagnosed so treatment will hopefully stablise ur pesky platets as i call them! Bws tina x.(tico)

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Thanks Tico.

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Thanks WileyFrench. That’s what I keep telling myself, but then I have that little voice in my head that likes to ruin everything. At almost 60 my nice hair is one of the few assets I have left. lol.

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And that’s exactly what I’m thinking! I’m 62 and have really good hair. Everything else is sliding, so it would be nice not to have that go south too! And if you learn how to keep that little voice quiet I’d like to find out!

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Hi wiley, just seen ur reply 2 bjay22,nice 2 know u've still got a great sense ov humour! Long may it continue! Bws tina x. (tico)

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