Hydroxyurea and hair loss

[Lambo1]

I have been on hydroxyurea for ET for over six years. My dose is low - 500 mgs three times a week. Up until now I have had zero side effects and my platelet count is in the normal range, so it is doing its job. However, I am now experiencing major hair loss (and as a woman in my 60s, I am not happy about this). Should I look at talking to my hematologist about changing my medication and if so, to what. Thanks in advance!

[hunter5582]

Alopecia is a known HU side effect. If you find it unacceptable then it is reasonable to discuss other options. Unfortunately, the other first-line option, Pegasys, is currently in short supply. Some patients have reported a lack of concern on the part of their provider about this adverse effect. Hopefully, you will not find this to be the case.

[EdwinaJ]

hi. I have been on 1500/1000 HU anternate days for almost four years now. Platelets running just under 600. I have noticed a huge difference in my hair both in volume and condition. I see a trichologist and use minoxidil lotion topically. It’s really helped. I think Regain shampoo has a low dose of it. Might be worth a try. Hope this helps. 😊

[lizzziep]

I was on hydroxy for 3 years for ET before I had side effects, I was changed to Anagrelide and was fine on that for years. My hair mostly came back, when I started on Rux for MF which I now have it came back even more!

[HazeBlue]

the drugs all come with side effects . I had to go down the wig route . Simply Wigs have a great selection . Look hem up on line . I get lots of wonderful comments on how my hair looks . Confidence is boosted as always felt self conscious about thinning hair .

[Planting in reply to HazeBlue]

hi

I’ve been on hydroxy for 7 years and although hair loss hasn’t been major I use wigs when I feel like it and I also get compliments on them. Brought a bit of fun into life!

[Carol0925]

Hi Lambo, I’m concerned about increasing hair loss too at 67yrs. I’m on Pegasys and been experiencing hair loss, I decided this drug would have fewer side than HU. There’s short supply of Pegasys which will potentially mean a change to HU which I’m dreading 😬. Hope you find a solution. 🤞🤞🙏

[Lambo1 in reply to Carol0925]

Hi, Carol. My concern about Pegasys is that it is administered sub-Q, right? I couldn’t do that.

[Loubprv Volunteer]

Hi

I took hu for 16 years until I started to have skin issues. ( precancerous marks on my 68 year old face!)

I would definitely contact your haemo and ask to be changed to another drug. Louise x

[Alfiesarah in reply to Loubprv]

Hi can I just ask what your platelet level is please? I'm 66 female ET and JAK2 ..struggle a bit with hydroxy side effects..hair thinning being one of them. My platelets were 840 when diagnosed Oct 2021 was on 1000mg daily..they were 380 2 months ago and so daily dosage reduced to 500mg and I saw a big positive difference in my hair. Platelets shot up to 615 last week so back on 1000mg until next review in 6 weeks..I totally empathise as I am now dreading the hair thinning again! I hope you get sorted!

[Lambo1 in reply to Alfiesarah]

Hi, I started on hydroxyurea in April 2018. I started on 500 mg/day and this has been reduced over time to just three times a week. My platelets were 880 at diagnosis and have consistently been about 380 on the lower dose. My hair actually got a way curlier until the last few months when I have noticed major thinning. When I was diagnosed with ET I was also diagnosed with breast cancer and CLL - my ET took third place as a concern until now. The hematologist I see specializes in CLL so I think maybe it is time to see one who specializes in MPNs.

[Neghdar73 in reply to Lambo1]

Hello dear, so sorry for your multiple cases diagnosed, I was diagnosed on August 2023 with Renal Cell carcinoma, and ET , had a Nephrectomy right kidney and started 1000 Anagrelide combined with 1000 HU for a year now still Platelets are not in normal range , you are not alone

[Lambo1 in reply to Neghdar73]

Thanks, Neghdar. Hope everything stabilizes for you.

[Loubprv Volunteer in reply to Alfiesarah]

Hi

I m possibly not the best person to ask!

I have PV. However my platelets were 1600 after I transitioned to interferon from HU.

HU was brill for me for 16 yrs with no side effects ( interferon didn’t work for me as it does for hundreds of others!) I think my poor old body went Eeek what’s this stuff…

I m now on Ruxolitinib ( 15mgs twice a day ) which in 4 weeks has lowered my platelets from 1600 to 800 so at the mo I’m a happy bunny and feel very well.

As you know with MPN’s levels can go up and down Willy nilly.

Louise. X

[Blood123 in reply to Loubprv]

Hi. PV for 12 years & HU for most of it & taking 1000mg daily for several years now. Some hair thinning, basil & squamous cell scalp & face. Platelets 900’s, hematicrit 39. Female & 76

[KLCTJC]

I would go see your dermatologist. I have put lots of people on low dose oral minoxidil and it has really helped. Some I have seen increased hair growth and others have said they are just happy that it is keeping what they have. Now they will have to determine if you are appropriate for it. And of course topical is typically safe, but all hair loss drugs need a minimum of 6mos to see improvement and then you will have to continue it. I compare it to BP meds to my pts, you stop it and your BP goes up. Their is also PRP which can work great and red light cap works well too, but these can be expensive. But the benefit to the cap and PRP is anyone can do it. As far as I know anyone with any co-morbidities and other health conditions can do it, just costly and requires several treatments. Your dermatologist can also determine what is causing your hair loss and help treat it from there. We have come a long way in treating hair loss. Even in the last 11 years in dermatology I have seen hair loss options really improve. I would make an appointment with your dermatologist.

[Lambo1 in reply to KLCTJC]

Thanks for the suggestion to talk to my dermatologist. I see one regularly as i also have skin cancer issues.

[TLJ-1]

It's not mentioned in this thread, but many people have previously mentioned on this forum that biotin helps to minimize hair loss. I am male with MF with 1000 mg/day of HU. I take 5000 mcg/day biotin. I started this >2.5 yr ago when I first started HU. While I've noticed hair thinning, it is tolerable.

[Lambo1 in reply to TLJ-1]

Thanks for the tip. I have looked it up and see it is an OTC which makes it easy to get.

[AdaJane007]

Hi, just wanted to say that you're not alone. I have ET and have been on Hydroxyurea for five years. Up until now, I've not had many side effects. My hair was a bit thin but I've been able to keep it looking ok with lots of conditioner, and could even colour it ok. Now all of a sudden, it is going white, dropping out all over the place and my hair is receding. I have split ends all over. It is really affecting my confidence.

My haematologist did mention an alternative to Hydroxyurea when I was diagnosed, think it was injection, but she said it could cause depression, which I suffer from already, so am afraid to try it.

I just keep hoping that this is a phase and maybe my hair will get back on track again!!

I bought a couple of wigs, so might try them out. 🙂

[Lambo1 in reply to AdaJane007]

Hi, AdaJane. One person suggested Biotin, an over-the-counter supplement. Somebody suggested asking a dermatologist for minoxidil. I am going to try Biotin and look in to the other. I wouldn’t be able to do interferon/Pegasys instead of hydroxyurea because it is by sub-Q injection. - couldn’t do that. Good luck at your end!

[AdaJane007 in reply to Lambo1]

Thanks I will try the Biotin too. let's hope it helps. Good luck !

[Fairyglen]

I am only on 500mg 3 days per week of Hydroxy for over a year now, I have lost most of my hair, bald patches back, top and overall hair, almost unmanageable. 2 years since diagnosis. Haematologist reduced dosage from 500mg daily to the 3 per week. My platelets are still elevated though have come down somewhat. Problem is my scalp gets itchy, so wearing a wig full time wouldn't solve problem due to itch. I just don't know where to turn at this point. I have PV with a JAK2 mutation.

[Lambo1 in reply to Fairyglen]

So we are on the same dose. I guess I should consider myself lucky that I made it six years on the stuff before my hair started to fall out. Not a nice thing, for sure. Sorry yours is so severe. I don’t know about a wig. I think my next phase will be figuring out scarves.