Hairloss

[Sivasi]

I read posts on this site everyday and it's been so good to hear other stories and advice. Thank you all. Does anyone else suffer from severe hair loss as a result of taking Hydroxycarbamide? Mine's nearly all gone now and I have to wear a wig, which I hate doing. I've discussed with my consultant and I'm planning on changing medication to Anagrelide or Interferon, for this reason. Hope I'm making the right decision!

[hunter5582]

We each react differently to the medications used to treat MPNs. I did much better on the interferons than I did on hydroxy, both tolerance and efficacy. You will find others who do not do well on the IFNs. The only way to find out what will work best for you is to try.

Wishing you all the best moving forward.

[Sivasi in reply to hunter5582]

Thank you. Fingers crossed!

[EPguy]

I had thinned hair from just over a year on HU. Since changing to Besermi it has not come back but not worsened. Losing near all of it is unusual and I see in your prior post the other adverse results of HU. Good reason to switch to something else.

If you have access to either of Anag or IFN, you should consider trying the IFN first if Dr is ok with that. It is a more modern solution that has potential benefits Anag cannot offer. We discussed anag potential downside in your prior post.

You can also ask about the Bomedemstat trial, this agent is proving good for PLT control:

clinicaltrials.gov/ct2/show...

It has a section in UK:

University College London Hospitals NHS Foundation Trust

London, United Kingdom, NW1 12G

Guy's and Saint Thomas' NHS Foundation Trus

London, United Kingdom, SE1 9RT

[Sivasi in reply to EPguy]

Many thanks. So useful!

[Wyebird in reply to EPguy]

I’m under Guy’s so was interested in reading about Bomedemstat.

No doubt I wasn’t considered because I’ve had a stroke.

[EPguy in reply to Wyebird]

They are fussy who gets into trials. As my Dr says, the sponsors want best odds for the trial to succeed.

[ciye in reply to Wyebird]

I had lung surgery and was told bu Guys I am not suitable for trials.

[Stripecat]

Hi Sivasi

I also had hair loss on hydroxy

Mainly my eyebrows which I hated so my Doc put me on anangrelide and lowered the hydroxy dose. This worked really well for me and my eyebrows thickened up again

[Sivasi in reply to Stripecat]

Thank you. I'll discuss with my consultant.

[TLJ-1]

Hey Sivasi,

I read on this forum about the time I started HU (HC) 7 months ago that biotin minimized hair loss. Being slightly vain, I started taking it right away. I take 5000 mcg/day, which is less than others take but as much as I'm willing to take. I think my hair has thinned very slightly, but others cannot detect any significant thinning. I suspect the biotin may be helping.

[Sivasi in reply to TLJ-1]

Thank you! I've never heard of it but I'll look into it.

[Whitehair51 in reply to Sivasi]

You might want to check with your MD, biotin can mask or affect some blood tests.

[EPguy in reply to TLJ-1]

I just had my Hem visit today and asked about biotin. He said it's harmless, but should be stopped a week before the blood draw to prevent affecting the test.

[Moina-vdh]

Hi Sivasi,

I’m on interferon and I have suffered from hair loss. Nobody in my family has lost their hair even at old age and I’m only 53 years old. I can’t see it being a result from anything else but the meds. I have mentioned it to my consultant but as I otherwise tolerate interferon very well, this is not really something that concerns them. Furthermore, it’s a common side effect on alternatives, too, so changing meds is not likely to improve the situation. I have lost my eye brows and my hair is thinning especially above the ears and hairline has significantly moved back. It’s not an easy thing to happen, especially to a woman, I feel.

I have started to use anti hair loss shampoo and take supplements to support hair and skin. I can’t say it having improved, but hopefully doesn’t worsen.

Good luck, I really hope you find a solution.

[Sivasi in reply to Moina-vdh]

Thank you. I've found it very difficult to cope with. As you say, hair loss for women is hard to take and I don't think my consultant really understands that. Other people have suggested biotin, so I'll give it a go.

[ainslie in reply to Moina-vdh]

just want to correct you on one small point, I don’t know if hairloss is a common side effect of Interferon but it is not a side effect of Ruxolitinib, in fact Ruxolitinib bizarrely was and maybe still is a treatment for certain types of alopecia

[Moina-vdh in reply to ainslie]

Thank you, that’s really good to know. Currently the two options I have been given as medication are interferon and HU. I know there are other meds, but they were not considered in my treatment. I think because I’m relatively young, interferon was the first choice for me.

[Looolooo]

I take interferon too and have experienced hair thinning. Extra strong multivitamins with biotin does work. Not lush hair but much less thinning and some regrowth now seen. Takes about 3 months to work.

[Sivasi in reply to Looolooo]

Thanks looolooo, you're the second person to recommend biotin. Worth a try.

[Looolooo in reply to Sivasi]

Yes. Nobody really understands the psychological impact of hair thinning especially when your hair has been part of your pre PV identity. It's so upsetting.

[Oscarsboy]

I have a follow up consultation this afternoon, and this has been an ongoing issue for me. I have not lost all my hair but lose more than i did pre hydroxy every wash,together with some severe muscle pain which nothing is controlling so its all up for discussion today.

[Sivasi in reply to Oscarsboy]

Thank you. I'd be interested to know what your consultant says.

[Oscarsboy in reply to Sivasi]

Well as far as the hair loss is concerned, the Consultant looked at me and sort of shrugged, admitting it was one of the issues with Hydroxy. However she did add that some of the alternatives also cause exactly the same problems, along with other added side effects. As far as the shoulder/muscle pain is concerned I am having codeine trial to see if it helps keep it in check, just taking one a day to start with and see how it goes. Also dropping my hydroxy tablets by two a week to see if it makes any difference. However, another test in a month to check how it affects platelets, as what I am on at the moment seems to be keeping it steady and there is a risk of course they will now rise again. If that is the case, then back up to two extra a week. I also take a marine collagen supplement daily to help with nails and hair which you may like to try. I have cleared this with the consultant this afternoon, and she said provided it is NOT combined with any other vitamins it is fine. Birch & Wild Marine Colagen Boost and Revive. Sustainably sourced vegetarian capsule. You can check online if you feel it may be useful.

[Moina-vdh in reply to Oscarsboy]

depending on muscle pain some minerals can help. Especially if you have cramps, magnesium can be helpful. Also, drinking mineral water can help a little. You may want to discuss this with your consultant, if you are just about to see them anyway.

[light]

So sorry to hear hair loss situation for you. I also had hairless when I was on hydroxy for two and hals years. I also had my eyebrow loss and mouth ulcers. then I went on Peg Interferon and been on for eight years and I have constant battle with hair-loss and by now I even don't have any eyebrow left. I am taking some supplements to help with this unfortunate situation.

Wishing you well

[Sivasi in reply to light]

Thank you. Wishing you well too.

[marcmcalester]

Hi there, sorry to hear about your hair loss, I have been taking Hydroxy for a few months now and haven't noticed hair loss, im 50 male so thinning a bit anyway, I have long hair and always have so im very concerned about hair loss, scars the hell outa me, ive also developed cold sores that won't go away, I presume this is a side effect?

hope you re well

m

[Sivasi in reply to marcmcalester]

Yes thank you, apart from the hair loss I'm fine! I tolerate Hydroxy well. Hope you will Toto.

[Sivasi in reply to marcmcalester]

Sorry, too, not Toto.

[KLCTJC]

I can’t speak about how meds are affecting my hair just yet. I go to see MD Anderson in two weeks and a decision will be made. I have a kink since I found out I apparently have had MS for many years and didn’t know it! Anyways, I am a dermatology PA and I deal with hair loss daily. Men’s rogaine is worth a try if you can use it, but can take 6mos to see improvement, but is easy and decently affordable. There are other oral meds too you can discuss with your dermatologist which you should be seeing one being on HU. And PRP is very helpful. Insurance usually doesn’t cover it but it will be one of the first procedures I would do if I experience this. There is also a new cap that helps cancer patients. Talk to your dermatologist! There are things out there. Hope this helps

[Sivasi in reply to KLCTJC]

Thank you. It does help.

[Wyebird in reply to KLCTJC]

I’m really interested in learning about men’s Regain. I’ve been taking ladies for years with no significant improvement. Is it cleaniy proven to help with chemo hair loss?

[KLCTJC in reply to Wyebird]

I can not quote any specific study but it is used. And I never recommend woman’s rogaine no matter the reason. It is 100% worth a try. Do I think you will grow back thick hair, no. Hair loss is difficult no matter the reason. But there are things you can do and I highly recommend discussing with a dermatologist. I would pick one that has a cosmetic interest. And I would suggest a woman if possible. Women are just more understanding with this issue. There are even dermatologists that just do hair loss. I plan on starting men’s rogaine no matter what my doctor decides in a few weeks as hopefully a preventative. Biggest issue with hair loss is patience. It takes time and effort. I hope this helps.

[Wyebird in reply to KLCTJC]

thanks I’ve restarted it

[KLCTJC in reply to Wyebird]

You are so welcome, I hope it helps. But their are other things you can do too. I think all of it should be covered by insurance, but that is my opinion. I still think this is a good place to start

[Wyebird]

Devastating to hear about your hair loss. I’m afraid to be the bearer of bad news but I’ve lost more hair with Peg.

I love Peg. Let’s hope it agrees with your hair. It does for some people.

Anagrelide is a medication few can tolerate.

If that is your answer I hope it agrees with you.

Do keep us posted

[Moina-vdh]

Hi all,

Can I just say what a helpful post this has been to read. Thank you for you all for your contribution!

[Airslie]

Hi there! I’m so sorry about your hair loss. I was on Hydroxyurea for a year and my hair thinned out quite a bit among other side effects. I could not tolerate it but the hair loss was especially upsetting so I really feel for you. I took a 4 month break from it and as I had ET Jak2 I tried just doing the baby aspirin. It felt so good to get off of it! Unfortunately I progressed into PV so had to begin a treatment. The doctors pushed the hydrea but I refused so began Pegysus about 6-7 months ago. My MPN has gradually increased it and it’s now at 75 mg a week with no side effects at all. My hair has mostly returned but still a bit thin and I haven’t noticed any loss from the Peg. It has taken a while to take effect so I do have to get phlebotomies every 5 weeks or so and I did agree to temporarily take 1 hydrea a week of 500 mg. My last 2 checks have been good so praying its starting to kick in and I can drop the one pill. Anyway… just trying to encourage you to try the Peg.. and maybe mix it up a little for success and to feel better. Blessings to you!

[Sivasi in reply to Airslie]

Thank you!

[Margaret2022]

Hi I feel my hair is thinning which is really worrying me I will speak to the nurse in my next appointment

[Sivasi in reply to Margaret2022]

Yes it is worrying. I'm going to try biotin, which some people have recommended.