Hair loss from HU

[dogsandhorses]

I have been taking HU for 3 or 4 years now for ET. I recently had pancreatitis, and had to be off of it for a couple of weeks. Prior to that I had some hair loss, but since I resumed taking it, my hair loss has accelerated a lot. This may not be of concern to some people, but for a woman, going bald is very upsetting. I've lost at least half my total hair volume, and I dread for it to continue. Does anyone have any experience with this, and is there a solution?

[hunter5582]

I expect you already know that alopecia is one of the common adverse effects from HU.online.epocrates.com/drugs/...

A number of people on the forum have reported use of some hair care products that helped a bit, but I expect with 50% hair loss that these products would not help much. The literature is consistent in indicating that hair growth will usually resume when you discontinue HU, though color and texture may be changed.

lls.org/drug/hydroxyurea#:~....

Fortunately there are other options to treat ET if you find this adverse effect unacceptable. PEGylated interferons, Jakavi, and anagrelide are all options. Of course each of these meds can have their own side effects. Ultimately, it is up to you to decide which of your treatment option you prefer.

Hopefully some others can weigh in with their experiences.

[dogsandhorses in reply to hunter5582]

It doesn't look like I will ever discontinue use of the Hydroxyurea. The other drugs seem to have more life threatening side effects. I was hoping someone had discovered a miracle that would help slow or stop the hair loss! I take Biotin, and have tried many of the shampoos that are supposed to help, but nothing has so far. I even take 2.5 mg. of Finasteride daily, which seemed to help until after my recent bout with pancreatitis. HU has also totally ruined my fingernails. It's really sad that there are no real solutions to these problems.

[hunter5582 in reply to dogsandhorses]

Provided you believe that HU is the best option for you based on your risk tolerance then it is the best choice. Regarding all of the meds, just because something can happen does not mean that it will. I was unable to tolerate HU but have done well on PEG. No meaningful side effects and it works better than HU at a very low dose. That is my experience with both meds, which may or may not apply to anyone else. Hopefully others will weigh in with their experience.

[dogsandhorses in reply to hunter5582]

I'm not familiar with PEG. Can you tell me more about it?

[hunter5582 in reply to dogsandhorses]

PEG = Pegasys aka PEGylated interferon alpha 2a. It is the other first-line treatment option for ET. HU is a chemotherapy agent that is an antimetabolite/cytotoxin. It works by altering DNA activity in hematopoietic stem cells and and other cells in your body. Interferons are an immunotherapy (immunomodulator). They work by by attaching to receptors (targets) on body cells called interferon alfa/beta receptors (IFNAR). This starts several reactions that cause the bone marrow to produce fewer blood cells. These different mechanisms of action result in a different risk/benefit profiles.

Different people have different opinions on which is better both in terms of efficacy and tolerance. This is based in part on how people actually react to the meds. Some tolerate one and not the other. The other part of the equation is to assess what are your treatment goals, what is your risk tolerance priorities, and what is your preference for treatment approach.

Specific to your question about PEG, the pegylated formulation is a slower release medication that is much easier to tolerate than the older forms. The newest version, ropeginterferon alpha 2b (Besremi) is reputed to be even easier to tolerate. I have taken both. They are both easier for me to tolerate than HU and more effective for treatment of PV (with erythrocytosis and thrombocytosis).

No one should take my experience and necessarily apply it to themself as anyone else may react differently. Others may also have different goals, risk tolerance, and preferences. My preference for PEG over HU is based on my assessment of each medication option based on my goals/tolerance/preferences and experience with each medication. You will have to make this assessment for yourself.

Here are a few resources that may help you sort this for yourself.

mpnjournal.org/how-i-treat-...

legeforeningen.no/contentas...

drugs.com/monograph/hydroxy...

drugs.com/pro/pegasys.html

Hope that helps.

[dogsandhorses in reply to hunter5582]

Thank you. I will do the research.

[EPguy in reply to dogsandhorses]

Hunter says it well, the side effects for all the meds we take are weighed against the benefits. Both HU and interferons (INF) have FDA black box warnings, the most severe category.

It is worth discussing your concerns with a qualified expert, as the current generation of INF treatments are well tolerated by most who take them.

I agree that hair loss is worth attention if it causes duress, anything that increases stress levels is a negative for any medical condition. I have had some hair loss on HU, it is less issue for a guy, but not having that effect would be better and seeing a pretty face in the mirror is soothing. (I'm outgrowing that pleasure just fine anyway) I am switching to Besremi for other reasons right now.

[dogsandhorses in reply to EPguy]

It is causing me stress. I keep telling my bald on top husband that I will soon look like him, and I hope he likes it! He says we can get me a wig, but I'm an outdoor girl, and that would be terribly inconvenient and HOT. Maybe bald is beautiful, or beauty is in the eye of the beholder??

[hunter5582 in reply to dogsandhorses]

While you could no doubt rock the GI Jane look, it would likely make Demi Moore jealous. Doubtless you will beautiful to your husband no matter how much hair you have on your head. I expect that is what he is trying to tell you. I totally agree about a wig being hot. The hair on my head is mostly gone, but due to being male age 66. I love not having hat-head and no hair-care needs, but then I am a guy. And this really nice and attractive lady told me i looked more attractive with no hair on my head anyway.

What really matters is what matters to you. If the alopecia and nail damage are unacceptable, then they are unacceptable. It does not matter what matters to someone else. It is your body. Your choice. No one but you has the right to make this decision. No matter what you decide, know that you will have support from everyone on this forum.

All the best to you.

[dogsandhorses in reply to hunter5582]

Thank you!

[Nanasuki60 in reply to dogsandhorses]

HATS…funky hats😉

[GK40 in reply to dogsandhorses]

I have lost some hair while on HU but not as much as you. I do take biotin and collagen now and they seem to help. Agree that the side effects of their meds seem worse and while I hate the hair loss and brittle nails I think I'd rather that.

Stick with the biotin as it can take a while to take effect. I also find less hair washing, less aggressive brushing and less heat (hair drying, straighteners etc) also help me and use those funny hair ties that are loopy with rings or a loose scrunchie and don't tie them too tight is also good.

Sounds stupid I know but it's the little things that we can control that make a difference.

Xx

[Oscarsboy in reply to GK40]

Hi GK40 I was interested to read your reply as I have emailed one of the haemo nurses giving the contents of a Marine Collagen Tablet I want to try for all the reasons you state above. I wanted to check there were no contraindications with the hydroxy. However so far I have not had a reply so am interested to know whether you were able to check this out yourself before you started the collagen, or were happy to go ahead with it anyway. I lose about the size of a 50pence piece of hair every wash, and nails split and break so was looking to try this to see if it would help. Perhaps you would be kind enough to let me know. Many thanks.

[GK40 in reply to Oscarsboy]

I get squat support from my haematology department so I doubt I would have had a reply from them if I asked anyway. I think biotin and collagen help me and my circumstances with regards to hair and nails.

[Oscarsboy in reply to GK40]

Thank you.

[hunter5582 in reply to GK40]

Here is an excellent resource that will help with answers to questions about supplements like biotin. Be sure to read the For Professionals part too. If there are supplment-drug interaction they will show here. If none are listed - none were found. mskcc.org/cancer-care/diagn...

This site lets you just search for interactions.

reference.medscape.com/drug...

Do note that it is quite common for many providers to know little to nothing about the use of supplements or other complimentary health interventions. Some will just say "no" out of an abundance of caution. That is why I consult with an Integrative/Functional medicine doctor. I pay out-of-pocket for it and it is totally worth it.

[Lndcr4evr in reply to hunter5582]

Is it safe for us to take collagen supplements? When I started HU my doctor told me to stop all supplements of every kind! I would really like to take collagen but I have read that it increases platelet levels and helps with clotting, etc. which is obviously the last thing that I need😬

[dogsandhorses in reply to GK40]

Thank you for your reply. I just hope I don't go bald. I know it seems shallow, but my hair has always been the one thing that looks good!

[Kate2008]

HelloI’m 49 and only on HU 5 months now so sorry I haven’t any advise to give you.

I just wanted to say I really feel your heartache so sending love and hope things improve for you

Jenny x

[dogsandhorses in reply to Kate2008]

Thank you!

[ciye]

Switching to peg, hasn't helped with my hair loss, and to be honest most products that work have to be constantly used. Hormones, stress also also affect hair growth. Personally I am not young enough to brave bald and I don't think it vain to want to keep your hair.

I must have spent a fortune on products to help this over the years, everything seems to be snake oil...

[Mufftreacs]

Dear dogsandhorses,

I feel for you very much as a similar thing happened to me. I was on Hu for many years and with increases in my platelets, the dose was increased. Sadly, I was losing my hair and had a nasty leg ulcer.

Several other drugs were tried but the response was not good. Finally, I changed to Peg Interferon and I am so pleased I did. What I am really trying to say is that giving yourself an injection once a week is so much better than 3 or 4 HU capsules per day.

I was especially upset like you about my hair and nails as before I retired I lectured in Hair and Beauty at a college in the UK.

I am English but live in Australia and certainly did not want to wear a wig in this kind of heat.

Just to comfort you, my hair is still fine (it always was) but has stopped falling out and has not really lost its colour either and I am now nearly 81.

I have acrylic nails and keep them reasonably short so that they look natural and I can manage them. My own nails like yours became very brittle and looked dreadful.

Try Peg if your consultant is happy to change you over. It does have some side effects and may not be for you. I haven't looked back. in the last 2 years.

Good Luck

Katie

PS Sorry the photo is so big. Not very technical!!

Me taken a month ago. Still have my hair natural colour and it has stopped falling out.

[dogsandhorses in reply to Mufftreacs]

I will talk to my Dr. about the possible change. I mentioned it once, and he wasn't too thrilled to talk about it.

[hunter5582 in reply to dogsandhorses]

PEG and HU are both first-line treatment options for treating ET. Both are viable treatment options. It does not matter which medication the doctor prefers. What matters is which medication you prefer. If this doctor will not review all options and accept your preferences, suggest getting a new hematologist. Dr. Harrison explains how the process should work in this article. mpnjournal.org/how-i-treat-...

Just in case you need it.

mpnforum.com/list-hem./

All the best.

[lhammy66]

I’m am on a mixture of HU and peg interferon. Both have caused some hair loss but when HU was reduced I did regain a lot of thickness. Like you I lost about 50% of the weight of my hair. My HU is now going up again as neither drug alone is holding my blood counts stable. So I face more hair going again. I do however have a range of headwear that I enjoy and a couple of wigs for special occasions which I find I forget I have on fairly quickly after the first few times of worrying that they might fall off. Hats and scarves when out seem to work well. It’s a matter of adjustment to the idea but it was distressing as I had long curly thick blonde hair - so it has been a big change of identity as people always commented on it. Still, I am alive and that is more important.

[dogsandhorses in reply to lhammy66]

Thank you for the response. I am usually not very concerned with my looks, but this hair loss is really bothering me. Suppose there are UTube videos about how to wear and tie scarves. Since I am not completely bald yet, I guess I will quit worrying until that happens! Was just hoping there was something that could stop it while there was still a chance to do so.

[lhammy66]

I don’t think that there are any magic cures unfortunately. My loss is the top of my head more than the back so I have cut it short and have worn caps scarves and hats - some are really pretty. And yes utube has some great help on scarf wearing.