Hi all,
Quick update to the curly hair on acitretin story.... I finally got to see a dermatologist specialising in hair shaft disorders to talk about my new look super-curly hair. All the derm students were called in to take a look, and long story short, yes, curling is a side-effect of acitretin but it is *very rare* (my regular derm said she had been prescribing acitretin for 12 years and never seen anything like it).
Of course the boring part is that there is no treatment or cure for it, no guarantee that stopping acitretin will stop the curling, and no conditioner or hair mask that will make any difference. Also no-one seems to understand what exactly has happened to the hair, or why a very small number of people have this reaction. Guess it's just too small, obscure and trivial to be of much interest.
So, not much progress really, although I wasn't really expecting a breakthrough. So it's back to my journey exploring weird over-priced hair serums and salon treatments, *just in case* something transforms my hair.
Hope you other curlies are doing well, please share if you discover any hair magic!
Jo
Posted Thu 1 Jul 2021 02.19 by Yacht
Hair problems are a well-documented side-effect of retinoids (vitamin A), like acitretin, and can include hair loss, drying, kinking, curling, etc.
Some speculate curly hair by retinoids may (in simple terms) be caused by thickening of the hair root, thyroid or vitamin-D activation. A keritanised root / shaft could perhaps "bend" the hair and curl it.
Some might find this broadly related article (with photos) of useful interest.
https://link.springer.com/article/10.1007/s40800-018-0092-1
Posted Tue 6 Jul 2021 14.37 by Jo B
Thanks Yacht.
It's useful to understand more about the curling.
Also interesting to me - what does 'drying' actually mean in the context of hair on acitretin? At a molecular level, what has happened to the hair to make it look and feel so coarse and dry?
I could come to terms with the curling, but the straw-like texture is harder to work with. So, I'm always on the look out for any supplements, conditioners or treatments - anything! - which mitigate any of these changes.
An update for everyone:
It’s been 9 months since I stopped using the Acitretin. My hair has almost returned to normal. I noticed it over night it just one day felt like it used to, smooth and soft not wiry and dry. Then slowly began to return to its original state. Still not 100% straight like it was but it’s miles better and I’m hoping it continues to improve.
If anyone’s worried like I was there is hope, it seemed to me like my hair was ruined, but time has proved it can go back to normal.
Posted Thu 4 Nov 2021 23.18 by Moggy1
Thank you Shaun for the update
It’s very encouraging to hear my hair might get back to some form of normal. For me it’s the texture that’s been the biggest issue.
Has anyone had problems with their gums ?
Mine are constantly bleeding and reseeding at an alarming rate. It looks like I might lose a tooth . My dentist can’t explain the sudden change.
Take care everyone 😊
I
Posted Fri 5 Nov 2021 13.09 by Jo B
Yes thanks Shaun for the update, very encouraging. I've reduced my acitretin dose to 10mg per day but no real change to the crazy witch hair yet, probably need a few more months before I'll know if it helps.
Are you taking an alternative medication now? Methotrexate seems to be next in line but has worse side-effects in some way.
Posted Sat 6 Nov 2021 18.57 by Shaun McPrawn
Hello Jo.
I don’t think the hair will return to normal till acitretin is stopped and completely out of your system.
Following acitretin I was prescribed apremilast (otezela). This did nothing for my psoriasis at all sadly. I’ve actually just yesterday had a follow up appointment and have been approved for biological treatment. I’m just waiting for blood screening results. I will keep you informed. Good luck Jo.
Posted Tue 11 Oct 2022 14.53 by abz1976
I’ve just been told they are going to put me on this. I’m so worried because I had a gastric bypass a year ago and have hair fall out because of this. I’m so worried I’ll loose more and go curly 😞
I was on methotrexate 10 years ago that worked wonders. Total clear up but they won’t give me that because I had fatty liver. I’ve lost 7st and my liver is back to normal but they won’t risk giving it me again 😞
How does this work for other people is this drug good? X
Hi abz, it's hard to predict in advance who will get curly hair. I think it's quite a rare side-effect, if that helps.
I've been on acitretin since mid-2018 and had significant hair loss, with the regrowth being very curly as well as dry and wiry. I hate it. Now in 2022, even with my dose reduced, there's very little improvement. My hair looks a bit better because it's grown back in and I've learnt how to use leave-in conditioners, hairbands etc, but the texture and curl hasn't really changed. I've also began to get psoriasis on my elbows again so can't bring my dose down any lower.
It's always a tradeoff with these meds. For now I'm staying on 10mcg acitretin because the ruined hair is a little bit less awful than the red flaky skin, and I'm not really experiencing any other serious side-effects. But there are days when I think I might just shave my head and buy a wig.
Congratulations on managing your weight and liver, btw, that's really hard to do too!
Posted Tue 11 Oct 2022 17.58 by abz1976
Thanks so much for your reply. I guess your right. It’s a trade off. My skin is so horrible it’s probably worth it for me. Really appreciate your input xx
Posted Wed 19 Oct 2022 20.08 by Shaun McPrawn
Abz1976
Chin up, stay positive. Acitretin cleared my Psoriasis. As I said at the start of the post my hair did thin and the texture went crazy. Once I stopped the medication I thought my hair would never return to normal. After a year without the medicine my hair randomly just went back. It was crazy. If I was you and you are worried explain you don’t want to take this stuff. They can’t make you. Failing that put up with it for a few months and tell them the side effects are to much. Push as hard as you can for biologics. They’ve changed my life. Hope you succeed, don’t let it get you down to much there’s light at the end of the tunnel.
Posted Thu 23 Nov 2023 15.11 by kiloran From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023
Not curly but definitely hairier in my case 5 weeks in to Acitretin (25mg). Leg and hand hair (I'm a bloke) is thicker and curlier. Consultant is dropping dose to 10mg daily because I've also developed a rash with a small flat red dot often centred on follicles, particularly on my thighs. I'm pretty hairy already and not using any steroids other than a thin application of diprosalic to deal with foot plaques so its a bit of an odd reaction. No bad thing considering the cost of heating the house, a welcome bit of self-insulation!
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Posted Tue 13 Apr 2021 23.07 by Moggy1