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Hair loss

Hi, is hair loss related to Hydroxyurea? I saw today that I have a receding hair line. Is there anything we can do about that? Vitamins maybe as iron is not allowed? Is anyone experiencing the same?

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Hi Kelly2,

I’ve been wondering if I’m losing more hair than usual and starting to worry about that. I’ve got PV and have been taking Hydroxy since Nov 2016. I also need advice....

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Hi I also have PV. I started Hydro more than a month ago. I have to ask a doctor about that.

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I remember I had big hair loss during my first month on Hydroxy (I have long hair)and I was scared I was going to lose it all 😩😩 but it normalised....

Still I have the impression I lose more than normal....

Recently I bought a Kérastase shampoo to prevent hair loss, haven’t used it yet...

Eating carrots 🥕 seem to help...

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Mmm,yes,I think after 8 yrs of Hydrea mine is much finer than it was,I'm blonde tho,which always seems thinner than darker hair.There are many good products that help taken orally,lots of good shampoos and volume products that I would not be without.Good hairdresser for regular trims...this time of the year is 'shedding 'time for animals,then in spring,so don't panic too much we are the same,I have layers ,always helps to look thicker ,but shoulder length,any longer seems to shed more.Ageing too,in my case !!! Good Luck to find a helpful product and stylist.

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Hi Kelly2,

I took Hydroxuria for 8+ years (2004 - 2012) and never experienced any hair loss. My oncologist explained that Hydroxuria is an RNA based chemo not DNA based. DNA based causes hair loss apparently but not RNA.

Bippers

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Thank you for your replies. Maybe I should also take some supplements without iron.

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Hi, yes. It's on all the lists of side effects of Hydroxy I've looked at as "thinning hair. I take a supplement (showed my consultant the box and he said it was fine to take) and I believe my hair is better for it. Not sure why you say iron not allowed, I've taken iron supplement, again with consultants agreement, perhaps it is diagnosis dependent that you can't . Good luck, F.

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I was also told not to have iron due to pvr even though I am anaemia. My hair is thinning and I have taken the decision to stop dyeing my hair and let the grey show to see whether this helps my hair quality.

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Now I'm interested in knowing which supplement you are taking to help with your hair condition????? Very fine hair has been a problem of mine for a number of years and I don't think I have lost any more as a result of the medication but it is stated on Pegasys as well, as a possible side effect. the fact that I seem to be accumulating more side effects at present is a little worrying so I would like to be prepared if this one joins the others. A.T.B. P x

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I take Philip Kingsly Trico Complex.

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Hi, I have PV with high haematocrit so iron not allowed.

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I was told not to take iron. Iron helps build up red blood cells and the whole point of PV is that we have too many red cells and need to reduce them.

Carol.

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Exactly

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Thanks, I suspected it was diagnosis related, I have a different diagnosis and can take it.

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I have lost hair to the extent that I now wear a wig. My hairline has receded; there is a bald patch at the top and my scalp is showing through in other areas. My hair was always very fine but now it is even finer and much much thinner.

I am 73 so it could be to do with age and also could be to do with the medication I have been taking since a breast cancer op in 2014 (which has the side effect of thinning hair). I've been on hydroxy-carbamide for ET since early 2017 with, as you know, one of its side-effects being thinning hair. I can't completely lay the blame on the medications as my problem may be purely menopausal but I have it whatever the reason. (Ironically, I haven't gone grey.)

I tried the usual special shampoos - being careful they didn't interfere with the breast cancer med - my hairdresser did her best but it was a losing battle. Since wearing a wig I have been so much happier and more confident in myself. I don't find it a problem although it is an expense - but not really any more so than paying for dyeing on a regular basis. There are some lovely wigs around and my hairdresser belongs to 'mynewhair' which is a charity and a national network of independent salons and professionals who provide a wig styling service for people suffering from cancer and medical hair loss so she treats me with care and support.

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Hi, see if you can take some supplements.

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Why is iron not allowed? Have you got PV? I have ET JAK2+ and I have not been told I must not take iron, on the other hand nobody has suggested I take iron to raise the haemaglobin. A GP mentioned iron in liquid sachets, I bought Spatone water sachets and I occasionally add one in the large glass of water I have first thing in the morning with juice of half a lemon. This is because iron works well with Vitamin C. I don't know yet if this will raise my haemoglobin, next blood test will be in December.

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Hi, I have 49 haematocrit but with high deficiency in iron and I am not allowed to take it. I have PV

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I have the same set of conditions that you do. I am below anemic and the Dr. keeps me there. We are in a vicious cycle, the Hydroxy slows the production of a chemical from your kidneys that tells your bone marrow to make more red blood cells. Your body needs iron to make red blood cells. So by staying anemic, you are getting more benefit from the hydroxy. If your hematocrit levels go up above a preset level, 45% for me, you need a blood draw, venesection/phlebotomy, to lower the count quickly. If you increase your iron levels it just pushes up the hematocrit level and you need more drugs or bloodletting. And, you end up anemic/low iron levels once again. Also, your spleen has to filter out all of the old red blood cells, if you are making more than you should and you are, because you have PV, then your spleen has to work even harder to get rid of them. This is one reason your Dr. should be checking your spleen on each visit.

I struggled with this same question myself and had to go read up on the drugs and how my body works to understand why anemia was a good thing in my case.

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Yes I understand that high haematocrit is more important to them than the iron deficiency. In each visit he keeps reminding me that I should not take iron by any means! So I must try and find a supplement for my hair that does not contain it.

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Yes mine is much finer and thinner. I now use plantur shampoo conditioner and tonic. I also use ‘regaine’. It will only help with natural hair loss though. I figured if I tackle possible hereditary hair loss it might help.

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Yes. I have PV and take hydroxy which I've been on for nearly 2 years. My hair has started thinning just over the last few months. My hairdresser tells me it's a normal amount of hair loss and not to worry. My older sister who does not have an MPN has more severe hair loss and pointed me to Plantur 39 shampoo which certainly conditions the hair beautifully, but I'm not sure that it stops the hair loss. No bald patches at the moment, so I'm keeping my fingers crossed.

About the iron. Yes, if you have PV, as I understand it, you should definitely not take iron, as you have too many red blood cells already. Anaemia is OK for us.

Kind regards,

Sandra

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There is always hair transplant!

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Hi,

I lost a lot of hair after I started taking interferon. I saw a dermatologist who recommended minoxidil, a topical treatment available from the chemist. It has helped a lot.

Kind regards, Cecilie

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I am using it.

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Hi Kelly2! I started on Hydroxyurea 2 1/2 years ago and my hair is about half as thick as it used to be. I hate it because I used to have glossy, thick hair.

Minoxidil was actually a drug given to treat hypertension, then it was noted that patients who were taking it were regrowing hair. Now it is marketed as Rogaine and sells better as a treatment for hair loss. I notice that that the version for men is stronger than the version made for women, and I don’t know why.

Since I was started on BP medication about a year ago, next time I see my DR. I am going to see if he will switch me over to Minoxidil. Then maybe I can have my hair back and keep my BP under control at the same time.

Best wishes,

BonnieJ

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Hi Kelly,

My head’s ok but I have about two pubic hairs left!

Thinking of stringing some chartimas lights across to jolly things up a bit. 😂

My advice would be use a very wide toothed brush and if you colour your hair, stop.

Louise

x

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Hello

I have just read the comment about the chemo and intake of iron. What does RNA stand for and why should we not take iron? I am on 500mg daily Hydrea for ET and lack iron. I am extremely pale. Thanks for any feedback.

Anna

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Hi, iron is not allowed when having high haematocrit. I have very low iron and ferritin but the doctor is not bothered about that. He wants to keep the platelets down. On the other hand having a high haematocrit 49 does not make me feel tired and I am not pale. I don't know your condition so better ask your doctor.

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Will do, thanks Kelly

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Hi, when I was first prescribed hydroxyurea the consultant advised me that I could expect hair loss, and he was struggling to conceal a smile as I had a bald head! So from my experience, it would appear that hair loss is a side effect of hydroxy. As regards how to cope with it, I’m afraid I can’t help you there but no doubt there is someone who can help you amongst our band of MPN Warriors, good luck.

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I just want to find a hair supplement that does not contain iron.

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Hi Kelly, I have pv+et on hydro but my hair has got thicker plus I seem to be growing a little goaty beard🙃 😬 I am dark haired, my hair is short and I don't dye and never have plus I get it cut every couple of months. I am surprised because I prepared myself for hair loss.. it does say it on the tin😱.I have terrible itching so I use alot of baby products Johnson's and Sainsbury's own brand,I take CBD oil every now and again plus I eat alot of strawberries, raspberries pineapple and organic oats.

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Thank you very much Kelly I will give it ago. Apparently it is a chemical released in the cell which gives us the itch. I itch all day long, drives me nuts. It is difficult to pin point what sets it off, hopefully mine will go like yours. Was it after the itch did you begin to notice your hair loss or were they both happening at the same time?🤔

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I know! I am sure my itching will come back, I don't think I will be so lucky as to get rid of it permanently :(

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Hopefully it won't return. Keep a list of what you eat and drink and what you do through out the day and any changes you make to your routine, it may make it easier to pin point the cause if the itching returns.

I've just ordered 3 tubes, so hoping it helps me too. I can't figure out the cause, I did notice a slight internal temperature change last week but can not work out what chemical the cells expell or why. It is not the chemo because some people have the itching before medication. Good luck, fingers crossed that the itching stays dormant 😎 take care Angelina 😂

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No same time.

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Just don't use it in the morning because of the A vitamin or cover yourself from the sun. I just read that it was prescribed by a dermatologist also for hair loss!! So I'll try it there also! :)

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I would prefer the hair loss instead of the itching 😵

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