How to deal with Damage from Hydroxyurea.

[dogsandhorses]

I have ET, and have to take Hydroxyurea. It has made my hair fall out, which my Dr. has helped me with. It has caused mouth sores, which I treated myself with apple cider vinegar applied directly to the sores. It is causing my fingernails to be weak, and split all over. I used to have great nails. My concern is will it get down below the quick, and has anyone else had this problem, and treated it successfully?

[Pte82]

dogsandhorses, look into silica, collagen and vitamin C for splitting nails. Vitamin C will also strengthen your skin, blood vessels and bones. Hydroxyurea can cause leg ulcers that by keeping your vitamin C and collagen up will help prevent. A long lasting vitamin C will be your friend. It also causes loss of magnesium so supplementing will be necessary as diet cannot provide what you need. A magnesium deficiency can cause hair loss. It's also is needed to activate vitamin B1 which a deficiency of can cause hair loss and possibly mouth sores. Always consult with your health care provider before using any supplement.

[Doggy1903]

I wondered if you have had any other investigations?Any concerns re your thyroid or anemia? I ask as there are quite a few of us with this cluster of health problems, low vit B12 could also be a possible cause.

Hope you are eating well and drinking lots of fluid.

So sorry to hear of your troubles, take care and please let us know how you get on.

[Kinsale]

Hi dogsandhorses

I’m Mark and I was on hydroxy for two years when I first commenced treatment. My hair did start to thin and A kind soul here pointed me towards the Aveda Invati range of hair products as they assist with thinning. I have found they work very well for me and my hair has thickened back to its natural state. I still use them, however be warned they are very expensive (certainly here in Australia anyway), but that said I would pay any price to be honest. Hope this helps.

Cheers

Mark

[nodmeister]

Hi, I take Biotin for the hair. Seems to have done the trick. Good luck.

[HazeBlue]

I have the same problem. One toe nail is split vertically. Hair thin and scalp dry and a bit crusty. Keep head covered. I did obtain a couple of wigs but it’s hot to wear in Summer. I’ve sent for some nice cotton beanies. Good luck and hope you find nails and hair improve.

[Wyebird in reply to HazeBlue]

Has your tie nail split because it’s dry? If so I swear by argon oil. At first your skin and nails will soak it up like a sponge. It’s not expensive either

[HazeBlue in reply to Wyebird]

I will buy some and give it a try Thanks.

[Little-friend-Susan]

I did not lose my hair but it didn’t grow for about 6 months. My hairdresser can tell when the dose goes up. Same problem with nails and mouth ulcers which still crop up after 12 years. As I am 78 I do put some of this down to age but the medication doesn’t help.

[Oscarsboy]

I am sorry to hear this, and hope it can all be kept under control. I have ET with Jak2 and as I am starting this treatment tomorrow which is spread out over three days a week, it is now concerning me, but having spent this morning reading all the literature on side effects etc, know that there are many side effects that are possible. I wonder would anyone on here be happy to just post what side effects they have found whilst taking this, be they many or few, and how far into starting hydroxy did they symptoms start? From tablet one or a few days or weeks in? Thank you everyone who would care to respond and just give me a guideline of how you all cope with side effects if you have them. I know some people do not really experience any at all so would be good to get a bar of how anyone is affected.

[hunter5582 in reply to Oscarsboy]

It sounds like you already know that you will hear a wide range of answers. Some tolerate HU well and benefit from it. Others do not. I was one of those who did not. It did not adequately control HCT so also had to do phlebotomy every three weeks. I experienced adverse effects even at very low doses and could not increase dose. Here is my list.

Compromised intestinal endothelium - constipation

Thrush

Stomatitis - oral ulcers

Leukoplakia - severe dyschromia of tongue - caused permanent change in surface of tongue - geographic tongue.

These symptoms occurred even at 500mg every other day. It took several months post-discontinuing for the effects to mostly resolve. Note that my experience has nothing to do with how you react to HU. Hopefully you will be one who tolerates the HU well. If you do not, be assured that the adverse effects usually resolve when you discontinue and there are other options for cytoreduction.

Since you are going to give HU a try, there are some special handling instructions to be aware of.

oralchemoedsheets.com/sheet...

ethrombo.blogspot.com/2017/...

Wishing you all the best on this next stage of your journey with a MPN.

[nightshadow in reply to Oscarsboy]

Hi Oscarsboy,

I started on HU 500/mg day in January and now have been on 500 mg/5days a week and 1000/2 days a week for a couple of months. I have not noticed any side effects at that dosage. My hair does seem to be shedding more than when I started on HU, but it is hard to know if that is due to HU or that it has been a pretty warm summer. My hairdresser says that people shed more hair in the summer than winter months, so it could be either or both.

As hunter5582 points out, there is a wide tolerance to HU and the only way to know is to try it. And that any side effects will not be permanent.

[mhos61 in reply to Oscarsboy]

I’ve been on hydrea for five years (1x500mg) Monday to Friday with weekends free. It works well for me.

When I first began treatment I had the odd mouth ulcer, however, I don’t get them anymore, or any other adverse effects for that matter. The majority of people do tolerate this drug well, and should you be one of the few who don’t tolerate it, there are other options.

[Oscarsboy in reply to mhos61]

Thanks so much for your encouraging feed back.

[Wyebird in reply to Oscarsboy]

After 6 years on hu 17 hu and 9 anagrelide a week my skin a few months ago really went very very dry- argon oil is amazing for it .Hair loss started after about 1 year 1000mg hu a day

[HazeBlue in reply to Oscarsboy]

Starting the drugs is a worry but the consequences of not taking them is more worrying. I was on alternate days then every day and now doubling up dose on four days. Don’t like taking them but no choice really. Risk of strike or blood clot in leg or lungs is a risk .

[Oscarsboy in reply to HazeBlue]

Exactly.Thank you.

[HazeBlue in reply to Oscarsboy]

It’s scary starting the drugs but after a few months It gets easier and when you see the blood levels going to normal range it’s reassuring . Good luck with the mpn journey . I get confused a lot and misplace things . Sometimes I’m a bit of a dopey bird lol but that might be my age . Always good to chat on here.

[Oscarsboy in reply to HazeBlue]

I agree it is also probably to do with age!! Well that's what we can tell ourselves anyway. Thank you for your reassurance, first tablet taken today.

[Wyebird in reply to HazeBlue]

Yes those are my thoughts

[Doggy1903 in reply to Oscarsboy]

I take 500mg x3 weekly and 1000mgs x4 weekly. I have found I am a bit thirsty in the mornings and get very hot walking!The other side effect is rather an upset stomach in the mornings which then settles.

We all seem to have a different response, but some shared effects.

Water and a good diet, pleasant exercise all seem great.

Take care.

[Wyebird in reply to Doggy1903]

Yes you must carry water with you everywhere you go. If you start to feel a bit weird drink it. At least 1/2 pint Within 10mins you will be fine.

[Oscarsboy in reply to Doggy1903]

Thank you for exellent tips.

[DoubleF79]

Hi there. I’m a month into taking 2 x 500mg Hydroxy tablets. So far so good. Platelets down from 1500+ to 669 at last check. No side effects to note but I am loosing a bit more hair in the shower. I’m 41 with CAL-R x

[Oscarsboy in reply to DoubleF79]

Hi Is that 2 x 500 mg per day or once a week? I have noticed bit more hair loss mind you before I start so who knows.😱

[DoubleF79 in reply to Oscarsboy]

A day x

[hunter5582]

We are all different in how we respond to hydroxyurea (HU). Some tolerate it, but others do not. "Hydroxyurea is a highly toxic medication with a low therapeutic index." American Society of Health System Pharmacists. All of the adverse effects you report are common side effects from HU.drugs.com/monograph/hydroxy...

online.epocrates.com/drugs/...

I was unable to tolerate HU, encountering adverse effects even at very low doses. When I consulted with a MPN Specialist he took me off the HU. The good news is that the adverse effects will usually resolve once you discontinue the HU; however, it may take a while to recover from some of the adverse effects.

The good news is that there are other options for cytoreduction when you need it for your MPN treatment PEGylated Interferon is the other first-line treatment for ET.

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

legeforeningen.no/contentas...

HU and PEG each have a risk/benefit profile. So do the other treatment options like Jakafi and anagrelide. We each respond differently to each of these treatment options. We each have to weigh the risks and benefits of each of our choices and make a decision based on our own preferences. Sometimes the only way to find out what works is to try and see how our body reacts. It is up to you to decide whether the benefits of HU outweigh the adverse effects you are experiencing.

FYI - I also experienced the oral ulcers. I uses AO Provantage gel (Periosciences) to manage the sores. It really helped.

All the best to you.

[Oscarsboy in reply to hunter5582]

Thank you.

[Barney50]

I was on HU for 3 months - 200 mg twice a day. Unfortunately for me, I developed a fungal outbreak very quickly that was quite. severe. My bloods showed no improvement while on HU. I also developed hair thinning, brittle and splitting nails and other known side effects. My magnesium levels dropped as did the Bs. I am PV Jak 2 positive now on Jakafi. I was misdiagnosed for a few years so I cannot say if I started with ET. Also I was 69 when diagnosed

Please remember we are all different in our responses to medications. HU is a long- used medication with a good response history. Who monitors your condition is just as important as what medications you take.

Become very aware of YOUR responses and don’t fall into the trap of following a doctor’s orders just because they are the doctor. This is your body and your life.

Be your own best advocate and know you can not only live with your condition - you can thrive!

[Ratton726]

Has your medical consultant thought about changing your Hydroxy to something else.I couldn't tolerate Hydroxy -(very bad rash in intimate parts of my body)-am now on Anagrelide which seems fine (I have E.T)-wishing you well.

[dogsandhorses]

Angrelide has more heart side effects, and I have heart disease in my family, so I am afraid of it.

[Buggerbear in reply to dogsandhorses]

Hello dogsand horses!!

I have PV JAK2 and ET and took Hydroxy back in 2019. I did not tolerate it well... I had diahrea badly, skin problems, bumps on face. and my hair started failing out. My Dr. switched me to Angrelide and I developed heart side effects ... rapid beating of the heart and PVST. Heart Dr. wanted to do shock my electrical system to get my heart beating back normally. I said no thank you. I got off Angrelide and thankfully my heart is pretty normal. I have on Jakafi for over a year now,,,,first 10 mg, then 15 mg and now 20 mg twice daily.

Anyway, three months ago, two of my fingernails started lifting from the bottom of the nail bed and then entire nails came off starting at the side. I went to a dermatologist and was told it was from taking cancer drugs. My Oncology Dr. wasn't concerned in the least and just told me to take Biotin. It will take 8 - 12 months for my fingernails to grow back and will they be normal? My other nails are long and attractive so can't blame old age.

I know we all have to have these drugs to live having MPN's but it is scary what they do to your system and how long they stay in your body.

Good luck in your choices and your heath!!!