More hair loss questions!

[Na56]

Having just read the latest hair loss discussion I’m really worried. I have been on hydroxycarbemide for 2 months now. I’ve ET and platelets were 689 initially and after 5 weeks 537 so my tablets were increased from 7 a week to 9 a week. Really hoping that I’ll be able to go back to 7 a week. My husband who also has ET is not worried about losing hair but I really am! Should I start using biotin now and what dosage and if possible the name of the biotin used and the dosage. I’m no longer colouring my hair as the haematologist said not to so I’m accepting going grey but please not hair loss as well! Advice please. I’m in the Uk. Thank you Irene

[DJK12]

Although it is a known side effect you may well have no problems with this - we are all individual and drugs affect us in different ways. I was on Hu for about 15 years at increasingly higher doses and didn't lose hair which was good as my hair is fine to start with. I did have migraines though. It's the same with ruxolitinib I haven't put on weight - a very common side effect.

[Na56 in reply to DJK12]

Thank you for your comforting words. I’m still interested in biotin usage advice as a preventative measure and hope to hear from any users. Kind regards Irene

[SoledadBarcelona in reply to Na56]

Check your thyroides and D vitamine

[lakeview65]

Interesting that the hematologist told you to stop coloring your hair, I see my specialist in August and I will talk to him. I have too much white/grey on the top so I highlight and lowlight my hair and it has always been able to handle that process. Vanity, I cannot imagine stopping doing at least that. Biotin, I will have to look into that. I have a friend with Breast Cancer, she has very fine hair and has talked to the dermatologist many times about her thinning hair and they basically said that there is not much to do about it. Sometimes I feel like I am falling apart! I don't have any symptoms really so I should be happy all I have now is hair loss and a few basel cell cancers that started before Hydrea and diagnosis.

[Na56 in reply to lakeview65]

Thank you for your reply. I’ve seen a lot of posts from ladies who colour their hair with no problem but my haematologist said no chemicals on the scalp. I did wonder about highlights that don’t touch the roots but I think I’ll see about how thin my hair goes first. Can I ask you when your hair started to thin after you started hydroxycarbemide. Thanks Irene

[Murdoch01 in reply to Na56]

Hi Na 56, I have been on Hydroxycarbamide since 2017, I take 9 a week and although I was warned about hair loss it thankfully has not happened. I had my hair coloured and highlighted until I turned 70 three years ago before giving up, I was never told not to. Hopefully you won’t either.

[Na56 in reply to Murdoch01]

Thank you for your reassurance. Irene

[lakeview65 in reply to Na56]

6 months after I started Hydroxyurea.

[DoubleF79 in reply to Na56]

Hi. I’m on 17 tablets a day which have been increased over the last year. I’m 42 & highlight my hair & have done so since diagnosis 2.5 years ago. No mention of not to. My hair is falling out more but not in clumps or anything - thankfully! I take Biontin & it has helped. My skin & nails are benefiting from it too. Wishing you well 🙂

[Na56 in reply to DoubleF79]

Hi and thank you for your reply and good wishes. Would you please let me know which brand and dosage of biotin you take . Kind regards Irene

[SoledadBarcelona in reply to lakeview65]

Coloring any part of the body is a big big toxic

[Mostew in reply to lakeview65]

The less chemicals going into our bodies the better . Makes sense ..

[dancingfiend]

I have been on Hydroxycarbamide for almost a year now after belated diagnosis. Only just heard of biotin - not used yet. After a little research, continued to use ammonia-free hair colour. We must keep our peckers up!

[Na56 in reply to dancingfiend]

Absolutely! Does the hair colour you use work well and not cause problems? Irene

[Smudger0122]

Morning NA56Im on 15 HU a week, since March 2nd this year. Hoping to be reduced soon, before going possibly onto interferon as I am 45.

I don't apper to suffer any hair loss, but do have a short number 1 all over hair cut.

Fortunately I seem to be tolerating the drug quite well, with no real obvious side effects.

I am more concerned about eventually being moved onto interferon with self administering my own injections. Never been great with needles, typical luck to end up with a condition that involves frequent blood tests 🤣

Note your concerns and raise all with your haematology team, also perhaps mention being referred to a MPN specialist.

Keep safe

Smudger

[Na56 in reply to Smudger0122]

Thank you for your reply. My husband and I both started the hydroxycarbemide the same time as you. We thought we’d ask to see a specialist if any complications occur on this journey. I’m the same as you re needles. I’ll follow your posts and hope everything goes really well for you. Irene

[Smudger0122 in reply to Na56]

Was you both diagnosed with similar condition at same time then?

[Na56 in reply to Smudger0122]

Yes we were. Both have ET JAK2. We’re older than you I’m 69 and Dave is now 75. We’re on statins and our annual blood tests showed that our platelets had been increasing for a few years so our GP referred us to a haematologist . He was very surprised that we both have the condition and the pathology lab ran our blood tests twice because they didn’t believe it. All very strange but we have each other to get through it. Irene

[Smudger0122 in reply to Na56]

Very bizarre, remain strong and positive.

[ciye in reply to Smudger0122]

I was really worried about injecting, I found I had been fine doing it for over a year.

[Daisey123]

Morning I have been on hydroxcarbamide since Xmas and when I asked my haematology about colouring my hair she said yes .But I do have foils when I do it .I haven't noticed hair thinning with though. I take 1 tablet for six days and 2 on a Sunday. I Haven't heard of biotin so would like to know more please thanks

[Wyebird]

I believe biotin is a vitamin. I take it since reading about it on this site. I take 1 a day although at the moment I’m not( kitchen referb worse than moving)🥴. It’s packed away somewhere. I don’t think there is anything wrong with taking now. Always tell your heamo though.

[Daisey123 in reply to Wyebird]

Thanks thats a big help I will ask about it when I go to hospital on Tuesday

[CLONDARA]

Dear Irene, I have been on Hydrea for 10 months and my hair is fine. I have also continued to dye my hair with no ill effects. I am 62. I know we are all different butjust to let you know that many of us don't lose hair.

Best,

Valerie

[Na56 in reply to CLONDARA]

Thank you Valerie

[MWxxxx]

My hair has thinned really badly after taking Hydroxy. I think hats and scarves look pretty odd on me too, so I am always terribly self concious. My haematologist has always said not to take supplements so I don't take anything apart from Vitamin D (which was found to be pretty low after a blood test). I also have quite low ferritin. I've never heard about not colouring your hair. I do it all the time and never been told not to. What reason did your haematologist give? Is there some kind of interaction between hair colour and hydroxy?

[Na56 in reply to MWxxxx]

Hi My haematologist said do not put chemicals on your scalp and as he’d just got me pretty anxious saying I might lose clumps of hair I just accepted it. Irene

[Pv1955]

Hi, Irene,

I’m probably seriously shallow, but the Hydroxy hair loss thing had me completely alarmed. I could tell my doctor was like, “Really?”

I was diagnosed with PV with JAK2 October 2021, I’ve been on Hydroxy ever since - 1000mg 4 days, 500mg 3 days - I did lose quite a bit of my hair the first few months, my hematologist said the hair loss would stop, and it has. My hair is pretty much as before diagnosis. (I’ve always had fine hair, but a lot of it.) I do take biotin with my doctor’s blessing.

I do still color my hair, but only with temporary color now, nothing damaging. Temporary root touch up is great, and I highly recommend Redken Shades EQ gloss as being easy on your scalp and hair. I also use thickening shampoos, and I rarely use heat tools any more.

I will add that my nails have pretty much stopped growing since I’ve been on Hydroxy, but that’s okay with me-easier maintenance

Gail

[Na56 in reply to Pv1955]

Thank you for your hair tips. Can I ask what dosage of biotin you use please. Irene

[Pv1955 in reply to Na56]

Hi, Irene,

You’re very welcome, I don’t know how I would have navigated these last few months without this group, members are so generous with their time. My first hematologist was the *worst*, no help and no experience with MPNs.

(I had thought I had a receding hairline, when it was just my hair being damaged/burned by permanent color)

A side benefit of all that water they make us drink with Hydroxy, my complexion has never looked better

I’m attaching a picture of the Biotin I take - you can get higher doses, but I have read that higher doses of Biotin can interfere with B vitamin absorption.

I know Hydroxy sounds so frightening, I stared at the bottle for several days before I took it - but the members here were very reassuring about long-term usage with minimal side effects.

Other than some late afternoon fatigue, which is usually resolved by resting for half an hour, I’ve had no issues. My all-night headaches are gone, my platelets have gone from high 800s to 414, and my chronic acid reflux is gone. A fair trade for a little thinner hair to me.

Gail

Biotin

[Na56 in reply to Pv1955]

Thank you so much Gail for your help. Keep well. Irene

[Loobylou72]

I have been on interferon and didn’t get on with it. My skin had terrible itchy rash at needle site so switched back to hydroxy.

Since December I do inject tinziparin every night, which I never thought I would as I hate needles as have thread veins! I was on warfarin tablets but am on transplant list and needed different meds to support surgery. It’s amazing how you get used to it, although my left side stings more than the right!

Since my diagnosis I am slowly learning to not hate needles! There were tears at first though as I am a wuss.

Best of luck

[Na56 in reply to Loobylou72]

Thank you. Hopefully I’ll get confident with needles like you. Irene

[Loobylou72 in reply to Na56]

Also meant to say I colour my hair every 8 weeks as it's short and it's gone grey since I started on all the meds. I blame the stress of hospitals for it - nothing to do with my age.......!!!

[Wesleygrange2a]

I have PV and have been taking hydroxycarbamide for 15 years. I haven’t lost any hair and colour my hair regularly. Makes me feel good which is a bonus.

[Na56 in reply to Wesleygrange2a]

Hi That’s really good to hear. Thank you Irene

[soomoo]

Hi, ive been on hydroxycarbamide for 9 years, since I was 42. I take 12 tablets a week. I've never noticed any hair loss. I also colour my hair. I am on hrt so that might help keep it thicker. I wish you well.

[Na56 in reply to soomoo]

Thank you very much for your reply. Irene

[bjay22]

I’m 64 with ET jak 2+ have been taking hydroxy for going on 5 yrs, taking 10 capsules a week now & my hematologist said to go right ahead doing what I wish to my hair. I touch up roots every 5 weeks and every 3-4 months or so I get highlights. I also take a low dose of biotin for hair & nails just in case. I have very thin hair, but I always did. My hairdresser actually said my hair seemed thicker & healthier on my visit which shocked me.

[Na56 in reply to bjay22]

Very good to hear your hair story. Thank you

[Red64]

Hi, I'm 58 and have been on 4 x500 hydroxy daily for nearly a year. I initially had a little patch hair loss which has now grown back. I was advised that the colouring may be enhanced or go a different shade so I decided just to let my colour grow out, however my grey looks silly as it is in patches not throughout so just before Christmas I spoke to my hairdresser,who is also a friend, and she suggested not to bleach but to try a colour. She did a small patch test to make sure there was no reaction, even though it was one I had used previously, she than coloured a small patch of my hair that couldn't be seen in case of any disaster, and 48 hours later dyed my hair with no adverse reactions.Everybody reacts differently to it ,so it may be worth a try.

[Na56 in reply to Red64]

Hi Thanks for your reply. I may give colouring or highlights a go but I just want to see first how the tablets effect my hair. You ladies on this forum are being so helpful and I’m very grateful. Irene

[Annula]

Hi Na 56 - I am on the same dose Hydroxy - if you want to take supplements check with the pharmacist who handles your hydroxy, or speak to your clinician. I use a good shampoo to promote hair growth & it seems to be working.5 weeks is perhaps not long enough for platelets to settle -it usually takes 3 months at a constant dose to stabilise, so try to stay calm....Also a good diet with omega 3 is good too. Lots of luck....

[Annula]

I also colour my hair too - no probs so far, but have it done at the hairdressers as their products are put less stress on the hair than shoo bought ones..

[Na56 in reply to Annula]

Hi and thank you for your positive messages. Kind regards Irene

[Mardihel]

Hi I've been on hydroxy for almost 4 yrs I'm 66 and I have hi lites, but have noticed my hair thinning. I've been advised by a friend that Nioxin is good for the hair it's £28.50 in boots and recommended for chemo patients, so I'm going to try that. Good luck.

[Na56 in reply to Mardihel]

Thank you for your reply and I’ll definitely look into Nioxin. Hope it works well for both of us . Kind regards Irene

[kitttycat]

Hi I responded to your post and when typing it disappeared, i therefore don't know if you received. I have taken biotin (1000 mcg) for years - and I also have colored my hair for years- I have been taking hydroxyurea, for 1 1/2 years no aspirin at this point. The biotin has made my nails very nice. I will say it must have improved my hair also but I haven't really watched it, I think my hair is a bit thinner than before I took HU, its fine but in good shape. Biotin is a b vitamin - I believe it is B 7- B vitamins are soluble, the body will only take what it needs and excrete the rest . I also take a multivitamin every second day with the b's and a bit or iron as part of this. I believe its important to use good hair products and keep away from overly hot styling tools . If you go to a drugstore or health food store where they sell these products, I am sure they will recommend one for you. All the very best.

[Na56 in reply to kitttycat]

Thank you very much for your good advice. All the very best to you Irene