Hi Folks, just doing some research before my next appointment for my ET review in a few weeks time. I have been on Hydroxycarbomide for almost three years now and after an initial bit of hair loss I thought that was that and my hair would settle down. After a period of time I realise that I am loosing hair at a greater rate than I gain it, so the thinning continues. I know other drugs that are used for our treatment can also cause hair loss so my question is to you all what is left in the ET treatment arsenal that will not cause hair loss? Also, if I stop Hydroxy will my hair recover or is the loss permanent, the haematologists do not seem to have a definitive answer. I know the most important issue is that our bloods are within a good range, but when you do not feel unwell and you have to take a drug that produces a very visible response, it is a hard pill to swallow. I hope some of you can come up with information or ideas. Many thanks for reading my post.
Hair and ET treatment.: Hi Folks, just doing some... - MPN Voice
Hair and ET treatment.
There doesn't seem to be an answer for our joint problem of loosing our hair, shaft by shaft. I have been on Hydroxy since 2015, I can see my scalp through the hair that's left . When I asked my Hemo doc he shrugged his shoulders and said 'just buy a wig' .I really don't think they know or care. Hydroxy keeps me very warm bodily and if I were to wear a wig sweat would pour out of me like a watering can in the garden. I sympathise but only know most on Hydroxy have this same problem. Best wishes .
I believe that Jakavi is a drug where hair loss is not noted. It is not commonly used for ET. Pegasys is more commonly used for ET. Alopecia is not noted as a Pegasys side effect on all sites, but is on some. Perhaps it may be less likely to cause hair loss than hydroxy. That would be an issue to review with a MPN Specialist.
Some find that hair growth is restored after discontinuing hydroxy. Some have reported a permanent change in the color/texture of hair, however.
Some providers discount alopecia as a meaningful adverse effect. Given that cytoreductive treatment is long-term for MPNs, i would think that it is the patient's preference that should be the determining factor in tolerability. There are other options to hydroxy that are recognized as options. It is up to you to decide which risk/benefit profile best meets your needs.
All the best.
using a caffeine shampoo such as Alrepecin can help to stop the thinning out.
I, too, have ET and experienced hair loss whilst on Hydroxy. I have switched to Interferon past couple of years and hair loss is no longer an issue. In fact, hair is like it was pre hair loss! Good luck with your journey ☺️
Hello Can I ask which interferon you use. Lovely to hear your hair is no longer thinning. Has the interferon worked well otherwise and not caused any other problems? Thanks Irene
Pegasys alpha-2a. I’ve had no issues with it; maybe fatigue but think much of that is ‘life’! Some years ago I was on a previous/older version of Interferon which I didn’t tolerate; the current version is lots better 👍
I have the same problem and as I work outside much of the time I’m going to need to buy a sun hat this summer to protect my scalp. I do find that using Chāmpo hair products (shampoo and serum) has slowed down the thinning. It’s expensive but I consider it worth the money. You don’t need much either - a bottle of each has lasted since last October using it 2-3 times per week. Hope this helps.
hi lovely friends I am also experiencing thining of my hair I can see my head scalp through my hair I have had ET and JAK2 since June last yr am currently taking pegasy and feel a bit lost atm am due to speak to my doctor next wk after I’ve had my bloods done
Were you taking Hydroxyurea when hair thinning started? I too was diagnosed ET JAK2 in June last year, on HU, and see hair thinning. I am going to talk to hemato,ogist about Pegasys when I see her next.
Thanks, Eileen
am on pegsy x I can see a difference but my partner says it’s ok but I know xx
Hi I am feeling exactly like you. I’ve been on hydroxycarbemide for almost a year 9 tablets a week and my hair is thinning. I hoped it would settle down but I’m worried now as you say you are still loosing hair. I wonder about interferon and hope more people post to say if their hair has done better on interferon. Can I ask how many tablets a week you take? I’m going to ask my haematologist next week about taking biotin for hair loss and my neighbour who is interested in herbs said to use rosemary essential oil on my scalp. According to Holland and Barrett you mix this with argon oil. Would you please let me know how you get on. Thank you Irene
Hi Irene, thanks for your response. I take the same dose as you and do not have any other side effects other than cold sores and mouth ulcers now and again but I suffered from those long before ET. I may also ask about the biotin but the consultant haematologists at my hospital do not hold 'alternative treatments' in high regard and I can understand why, there is not enough scientific evidence to support their use . The worrying thing is we end up spending so much money trying to find 'the cure' because we all need some hope. I have just ordered Nioxin hair treatment/shampoo from Amazon, my hairdresser recommended it's use as a result of his wife loosing her hair throughout chemotherapy. The difference for us of course is that we will be on our treatment for the rest of our lives when most cancer sufferers will only be on treatment for a period of time so at least their hair can recover. Please let me know what you come up with...good luck!
Hello again It’s really hard knowing what to try isn’t it. Could you please tell me which nioxin shampoo your hairdresser recommended. As you say it’s an expensive business trying to find a solution. All the best to you Irene
Hi, Nioxin 2 (progressive thinning). Amazon are doing a trio pack of shampoo, conditioner and scalp and hair treatment, 150 ml bottles at £25 and it's free delivery at present. Worth a go but will take a few months before we see any results (if any).
Hi Janis, I was on Anagrelide ( For ET) for circa 12 years and didn’t experience any hair loss.
I moved to pegasys sept 2022 and don’t think I have experienced any hair loss yet on PEG, I guess it still might be early days though.
Good luck with your journey.
Regards
Matt
I took daily Hydroxy 500mg for only 4 months and had hair loss as a result amongst other side effect .Now trialling Resveratrol and Clopidogrel for 3 months. In just 3 weeks my hair is thickening up and I have my eyebrows back! I’ve read about 10% of us will suffer some hair loss from Hydroxy . My MPN specialist says it’s not permanent. I hope you also find an alternative. There isn’t enough scientific evidence for me to recommend Resveratrol to you , however watch this space, I can only hope it reduces my platelet count.
I was on Hydroxyurea for approximately 6 months and very shortly into it, I started to experience drastic hair loss...clumps of hair in the shower. Stopped taking Hydroxyurea mainly due to other adverse side effects though. My hair has grown thicker again after stopping the Hydroxyurea. It did take several months.
This is very interesting as pre-diagnosis my hair was very thin, lank and you could easily see my scalp. When diagnosed with ET, and starting Hydroxy, my hair grew at a rate of knots and became very thick and long! I'd never had such long hair. It is still long but the issue I have, is the frizziness. No matter what I put on it, it remains frizzy, so I ten to wear it up most of the time. I do find Silica supplements help a lot with hair and nails.
wow that’s interesting we all have different genetics I guess 👍
I am on Hydroxycarbamide and I too now have frizzy curly hair as opposed to straight non frizzy . My hair was always thick BUT I have hair albeit nowhere near the same hair I used to have. C'est la Vie.
How weird. My hair has always been fine, curly and long and since being on the medication it does seem to grow more quickly but looks awful because it is so thin now. If I use conditioner it just makes my hair very soft so it looks even worse to the point where I do not want to brush it, at least if it's a bit tatty there is some resistance to it so I feel as if I have more than I actually do....desperate times! Thanks for your response.
It's the strangest thing isn't it! My hairdresser even accused me of having extensions as I had been trying to grow my hair for years. My hair may be long, but it's so frizzy it looks awful down, unless I spend an hour or so curling it, and who has time for that! 😆
I agree, once I get my cycling helmet on three times a week whatever I have managed to achieve with the hair is ruined immediately. It has got to the point I am embarrassed to take my helmet off at the lunch stops, northern humour being what it is I am expecting one of my cycling buddies to come out with some 'mickey take' sooner or later. Lets hope one of us finds the answer and can share it with the rest.
I am on Hydroxy and can see my scalp, I keep my hair short and get a cut every 8 weeks, this time when she got the mirror out I almost burst into tears. I was on hu for a year, peg for a year and have been back on Hydroxy fo 6 months, the hair loss has been the same.I also am suffering from a nasty outbreak of acne roscea which is as confidence sapping as the hair loss.
After discussing meds with specialist and heamo Angrelide was suggested but hair loss is also an adverse effect. It looks like I will have to wait for bomedemstat to be approved for use.
Does bomedemstat not cause hair loss?
Hi, sorry you are having the same issues. I remember when I was put onto Hydroxy the doctor did not even mention the hair loss issue although I am not sure if it would have changed anything. We all seem to react differently to the effects of these drugs do it would appear that it is very much pot luck in how we respond.
Hi - I have been on Hydroxy for 2 years & have increased hair loss too, I use a shampoo which stimulates growth & I think it helps. Also your hairdresser should be able to apply treatments which aren't too expensive. I think taking a vitamin supplement helps but check with pharmacy first to make sure there are no contra-indications with your meds -they are more knowledgeable than the doc usually. Lots of luck! xx
on Pegasys. No hair loss touch wood
I recommended to someone on a previous post to see your dermatologist. You should be seeing one being on HU due to increased risk of skin cancer. I would recommend seeing one that does some cosmetics. They have some treatments that can help at least until you decide if you are going to stay on HU.
I have been on dermatology list 2 yrs & despite chasing them I am afraid my NHS area has been pretty useless in that area 🙈
yes I had long thick hair & a month after Hydroxy it came out constantly it’s now very thin . It is still growing . But I changed to interferon & loss seems less although these drugs seem to dry & kill the hair at the root . It’s all in our genetics as some do not lose hair . I hope mine remains even though thinner. I found it was dose related. The less dose the better my hair is . Julia 👍
Each of us/our bodies react differently. During the times I've taken it, I had significant hair loss. None of it ever returned. Jakafi didn't help either. Yours may come back eventually. When it comes to ET, our questions are often met with "we just don't know". My 1st hem/onc told me since it's a Rare & weird cancer, that I'll have rare & weird stuff!Lori; ET dx 2000. Currently on Pegasys
I’m afraid to my knowledge there is no answer. Pegasys also cases hair loss for me - more!
I now treat myself to a weekly hair do.
I know it’s not within everyone’s budget and I’m very lucky to be so fortunate.
My hair thinned much more on HU...I was getting worried, but it certainly improved in the last year after switching to pegasys interferon x
I am so sorry that you are going through this. I was on hydroxy for 2 1/2 years and definitely had hair loss. I have now been on Pegasys for six months and I’m not sure if it has changed or not because my hair is still very thin. I appreciate everyone’s comments and will look into some of the suggestions because I know that it is difficult to see your hair thinning so much. I am hoping to keep myself on a low-dose of Pegasus, so that my hair loss does not increase dramatically. Of course, this depends on how my platelets are responding. Hopefully one of us will come up with a good solution and post it.
The very best of luck to you
Hi Janis 12
I too had hair loss from hydroxy, even my eyebrows became very sparse
I talked to my haematologist and she cut down the hydroxy and added anagrelide
Seemed to help as my eyebrows grew back in
. Maybe worth a try
That’s very interesting. Can I ask how many hydroxycarbemide tablets you now take per week and do you have any side effects from the anagrelide? Also is this for ET and is the combination keeping your platelets down? I’m seeing my haematologist next week and thought I could discuss this combination. Thank you Irene
Hi Irene
I replaced 2 hydroxy morning and night w anagrelide. I was on 3 hydroxy twice a day. I had no side effects from the anagrelide and it seemed to keep my platelets under control for many years
I have since progressed to MF so now take Jakavi. The main side effect with this is the weight gain!
I was only on Hydroxyurea for 7 months, discontinued due to peripheral neuropathy, and my hair is still fine and wispy.
I have been off the medication for almost a year now but find my hair still falling out more than is normal and it's in poor condition.
So my hair hasn't recovered almost a year after discontinuing Hydroxyurea.
It hasn't obviously thinned and my family haven't noticed but I know there's a difference.
I think the peripheral neuropathy did me a favour as I am no longer taking such a toxic medication. My platelets have actually dropped since being off it.
Many thanks to everyone who has replied to my 'hair loss' post. All the information and personal experiences will help me make some sort of informed decision when I next attend for my bloods, rightly or wrongly my hair has become more important than my platelets...vain I know.
Janis12, never, ever, think concerns over losing your hair is "vain". Hair loss, especially for a woman, can be a devastating side effect to our appearance and our self confidence. Keeping ET under control is important, but we shouldn't ignore or be afraid to bring up concerns about losing our hair. Thanks to you for bringing this up and to all the wonderful people who responded with some great ideas and advice. Best of luck to you.
Thanks for your reply, the advice I have received here has helped enormously and it is reassuring to know how other people have tackled this issue in a practical sense and also tackling the doctors head on as it were when it comes to treatment options. Onwards and upwards (with hair I hope!)
hi I have same problem I’m trying Anagrelide at present only on it for five week see what happens I use to get nauseous too my hair isn’t falling out as much at present I was on 17 capsules of 500mg a week good luck
Many thanks for your response, it's interesting to hear how everyone else is dealing with the problem. I do not think our doctors realise how much this effects us, it is so visible and makes you feel very self conscious. Good luck with your new meds.
ET and Eye Problem
Is hair loss a given?
Connection between Hair Loss and Covid Vaccine?
Anybody here with ET and hearing impairment?
Undiagnosed ET….advice please!
