Hair thinning

[Winchie]

I have been taking hydroxyurea for two years and noticed my hair is thinning on top and on the sides. Any advice ? Should I switch to another medication or do they have worse side effects? I will talk to my doctor about this in a month..

[EPguy]

I've been on all three of HU, IFN, and Rux. HU did thin my hair, and mess up my fingernails. IFN maybe did thin slightly. Rux has increased my hair thickness slightly.

These results are known for each med. Rux is actually proposed for certain hair loss conditions, but this should not be a primary consideration for any MPN decision.

Has your numbness and other relate symptoms gone away?

[Winchie in reply to EPguy]

At this time I have no other problems with Hydroxy

[hunter5582]

It is up to you to decide if the alopecia is an acceptable adverse effect. If it seems to be getting progressively worse, then you may (or may not) develop additional adverse effects. I believe that in the past you had also reported dry skin, which is a another known HU adverse effect. These issues are not as significant as the more serious adverse effects that can occur with HU (e.g., secondary cancers, peripheral neuropathy, renal impairment). Your MPN care team would be mindful of these more serious adverse effects and may not weigh hair and skin issues in the same way that you do. It is up to you to decide how significant the adverse effects you experience are in terms of your quality if life.

All of the treatment options for MPNs come with the risk of adverse effects. We each react differently to each of the medications. The only way to find out how you would react to a different medication is to try.

Making the decision to change medications would need to be based on your treatment goals, risk tolerance, and treatment preference. For instance, do you want to focus only on controlling risk of thrombosis or do you want to include reducing risk of progression? Are there secondary MPN symptoms that need to be addressed? What risks and adverse effects are you willing to tolerate in order to achieve your treatment goals? There is no black-and-white answer to these questions. The answer is unique to each individual.

Cost is sometimes a limiting factor in accessing medications. The cost of the medications varies widely. HU = $25/month. Pegasys = $4,200/Month. Jakafi = $14,000/month. Besremi = $15,000/month. Cost does factor in to accessing medications.

Wishing you all the best. Please do let us know how you get on.

[Winchie in reply to hunter5582]

Thank you Hunter for your advice

[russkatt]

my hair was thinning and fingernails cracking on HU. So I switched to Pegasus and it seems to have the same exact side effects. Maybe I should try are you RUX.

[HazeBlue in reply to russkatt]

I’ve been taking hydroxy for ten plus years . The hair los problem slows down but I use a wig . Takes confidence but I’m used to it . Nails cracking is side effect of the condition . When diagnosed the heam always looked at my nails . . If you tolerate the hydroxy id stick with it . All drugs have side effects .

[Winchie in reply to HazeBlue]

Thank you.

[dogsandhorses]

I've been on HU for 6 years, and among other things, my hair is reduced by about half the prior volume, and my nails are down to nubs. But hey, I'm still alive and functioning! I've used all the shampoos that are supposed to help, and none do much. I've also tried nearly everything for my nails, but they keep receding as well. I wear gloves to do about everything. I sleep on silk pillowcases, and use boar bristle hair brushes. I take half a Finasteride, and Biotin. Don't know if that really helps or not. Might be bald otherwise! It seems like most of the treatments for MPN's cause these things, and we have to figure out how to live with them. I'm trying to change medications due to other more serious side effects. I wish you the best of luck, and try not to stress, as that causes hair loss as well!

[Winchie in reply to dogsandhorses]

Thank you. Best of luck to you too.

[YBSx]

Hello

I’m ET jak2 positive and take Hydroxycarbamide for 3 years. I have thinning hair and tried lots and lots of methods to try and help this.

Nov last year I stated taking a high dose of collagen ( absolute Collagen 8000mg) daily plus I use their collagen shampoo. My hairdresser and myself are highly pleased with the results. My hair has not returned to the thickness it was but certainly is a lot thicker then what it was and you can no longer see my scalp through my hair. I also use Fudge Hair Thickener styling cream which I also like, helping my hair not to feel like cotton wool and easier to style.

It’s very difficult as what works for one may not work for another but take a look at Absolute Collagen….. Yvonne

[Winchie in reply to YBSx]

Thank you. Best wishes

[Exeter21]

only getting off Hydroxy will do it. I had lovely hair until on it. In only 3 months it wrecked it. Changed to Peg Interferon & after a year my hair is thick again & the grey caused on Hydroxy back growing my normal colour 👌 Julia

[Winchie in reply to Exeter21]

That’s great news!

[Janis12]

Hi, I have been on hydroxy four years now and have significant hair thinning. Although I say it myself I had lovely blond curly hair which was quite long, The Hydroxy has caused it to thin, become frizzy and turn grey. A friend of mine with breast cancer undergoing chemo was advised by the oncology nurse to use the Nioxin shampoo system. There are different systems depending on your hair (if its coloured or natural) and also the type of hair loss you are experiencing. There are three parts to the system and it is not particularly cheap but after using it for a year I am not sure that it has promoted any new growth but it does give my hair more body and therefore 'sits up' off my head a bit more. I decided to change to pegasys mainly for the hair loss issue and despite explaining to doctor that this was my main reason he never mentioned that hair loss was a side effect of pegasys. I am slowly coming off hydroxy but I am taking pegasys at the same time....double trouble! I also had my hair cut shorter which has also made it look thicker. Just in case the worst happens I have investigated wigs and head wraps but fingers crossed I will not need them. I do not think we get much holistic support in haematology, patients with other cancers who come under oncology appear to be given more advice including referrals to help address the peripheral issues of our treatments. I have found it upsetting but I am managing to cope after doing research and also picking up tips on this forum. Good luck

[Winchie in reply to Janis12]

Thank you for advice. Good luck

[TLJ-1]

I am surprised only one other person replied to you mentioning biotin. Several people on the forum had recommended it (one using as much as 12,000 micrograms per day), so I started taking it nearly 2 years ago. I use 5000 µg per day and find that it has minimized my hair loss from my gram per day HU. For other reasons, my wife started using it about that time and found her nails have much improved too.

[Winchie in reply to TLJ-1]

I had been taking 1000 MCG but just ordered 5000 MCG today. I am glad to know that it is helping you and maybe increasing it will help me. thanks for writing.

[Winchie in reply to Winchie]

I should’ve mentioned this right away. It doesn’t seem like my hair is falling out. It seems more like it’s just not coming in as thick as it was. I am trying a higher dose of biotin and I’ll see if that works.

[Whitehair51]

You have to be careful with biotin as it can affect cardiac lab tests.

[Winchie in reply to Whitehair51]

😞

[TLJ-1]

As Whitehair51 points out, biotin can skew lab tests. I don't take any for two days before a blood test – TSH is the potential problem for me.

[Winchie in reply to TLJ-1]

good point

[Mardihel]

Hi its awful the side effects of hydroxy, I've been on it 6years and my hair thinner, I've started using nioxin 3 care system and it has reduced the hair loss and makes my hair feel thicker good luck know how you feel.

[Winchie in reply to Mardihel]

thank you good luck to you too.

[brightlys]

I've been on HU for almost 4 years now and my hair has thinned, grayed and I experience a lot more breakage than ever before. I started with A LOT of hair, so it's mostly the frizz from breakage and gray hair that's noticeable. I notice the thinning but everyone tells me it's not noticeable. I hadn't realized other people experience graying on HU, so this thread has been really help for me.

If my MPN specialist I see thought PEG would be good for me, I would try that. I hear so many positive experiences from people who switched to PEG. But the specialist is concerned that PEG will exacerbate my migraines, so I'm still on HU. Right now I'm hesitant to try anagrelide, so I've just tried to accept my hair issues.

[Winchie in reply to brightlys]

Good Luck!

[ERei]

I lost a lot of hair when on HU 500mg every day. I'm now on it every 3rd day & noticed my hair loss has decreased. When I discussed this with my MPN doc he said HU is known for hair loss as a side effect. He said it can happen with besremi but this side effect is not as frequent. Biotin is also suggested to help reduce hair loss but not sure if it really helps

[Winchie in reply to ERei]

That’s not good news. I have increased my biotin. I’m taking more than you though: 500 for two days and the third day 1000. this is actually a decrease because I was doing one thousand 1000 for two days and 500 for the third. My white count was getting too low so we are trying this now

[Wendrew]

Hi All, started hydroxy in 12/23 & wondered if I was imagining my hair getting thinner till I read your post! I’ve always been on biotin & am wondering if there’s an effective collagen pill that combines effectiveness with affordability? Thanks