Hello all, I have been off Acitretin for three months now as i began to lose my hair and it turned it from smooth straight hair to dry frizzy wire like curls. The psoriasis has returned but my hair has shown no signs of returning to its normal state. Anyone have any ideas when my hair will go back to normal?
Hi - Many years ago I was on Tigason (Eltretinate) and came off it because my hair was falling out. I also grew back dry frizzy wire curls which I rather liked after years of fine straight hair! I don't remember the timescale, but it did return to normal and I now have fine straight hair!
I had a course of this dreadful stuff and lost all my bodily hair my hair on my scalp fell out in clumps and was so dry it snapped when I combed it I then developed severe sciatica as a result if it, It took about 8 months for any normality to come back to my hair. I suggest you invest in a really good treatment shampoo and conditioner for extreme dry hair and be patient it will get better I promise I for one wished I had never taken that stuff I still have no brows and my lashes are almost non existent
Posted Tue 4 May 2021 16.13 by Moggy1
Hi. Scarletsmummy can I ask how long before your hair started being effected ?
I have just started taking 10mg acitretin daily as I was desperate as have had plustular psoriasis on my hands for six months and have had limited use of them which has been soul destroying. I have never felt so down in my life 😢
So far I have only really suffered dry lips ,mouth , and nose and been extremely thirsty however this weekend I have noticed I am starting to lose more hair and it’s suddenly very dry.
On the plus side my hands are starting to clear.
Worried the cure may be worse than the disease
My hair became extremely dry about a week after taking them , it started falling out about 3 months into treatment and it was so very very dry I came off the the acitretin as i was getting more upset with the state of my hair . I still have no eyebrows and lashes and my hair is just about coming back with regular cutting and extremely good conditioners ,My lips were so sore whilst i took these i could not even drink hot tea
Good luck
Posted Tue 4 May 2021 16.49 by Moggy1
Thank you for you honesty. I will let you know how I get on .
Like I said desperate times need desperate measures.
one tip i have got regarding your sore lips , get some nipple cream from the baby section of the chemist and put it on every night ,Its the best thing for your cracking lips
Posted Tue 4 May 2021 17.37 by Moggy1
Thank you.
I will definitely try 🙂
Posted Tue 18 May 2021 15.41 by Moggy1
Five weeks into taking acitretin
Hair getting drier by the day frightened of touching it 😩
Eyes seem to settled down lips and mouth dry. Nipple cream works thanks for the tip scarletsmummy.
Hand 90% clear but peeling and very sensitive.
Having loads of flushes but am also menopausal so not sure if this is a side effect of tablets.
Seeing dermatologist Monday so hoping might get a date to start phototherapy treatment.
Hope everyone is doing ok . Take care 😊
Posted Tue 29 Jun 2021 20.14 by Moggy1
Another appointment on Monday with dermatologist to discuss hair loss and changes in texture as she’s concerned this shouldn’t be a side effect of acitretin. Confused as this is listed as possible side effect. Will see what she has to say 🤔
Posted Mon 5 Jul 2021 20.51 by Moggy1
Had my appointment today with the dermatologist
Was very aware of effects of hair changes while taking acitretin (it was the nurse who made the appointment who wasn’t) basically said it was a side effect and very much dose related. I am now going to be taking 10mg every other day so will wait and see. Still no date for phototherapy ☹️
Posted Tue 6 Jul 2021 00.06 by Faith
Hi all I find reading your queries and comments very helpful I've been taking acitretin for 6 months started on 25mg daily but had horrendous side effects within 2or so months (more than 18 from the list) they lowered my dose about 2 months ago to 25mg every other day not convinced it's doing me any good (new patches still appearing) but persevering anyway the side effects have diminished considerably and my hair seems to be starting to grow again (I'm hopeful) has anyone's psoriasis been improved by this drug?
Good luck to all 😊 x
Posted Tue 6 Jul 2021 00.39 by Moggy1
Hi Faith
Sorry your side effects are so bad.
Yes I have had good results with acitretin not 100% but about 85% clearance after 12 weeks Only take 10mg daily but I am less than 5 ft tall so dose is size related.
My hair is still thinning but settled a little and other side effects have settled all except dry mouth and lips.
Have you been offered phototherapy as I am hoping this will give me a good period of remission and I can stop the tablets.
Must stay positive
Good luck with everything
Posted Tue 6 Jul 2021 09.44 by Shaun McPrawn
Yes Faith I had really good results on my psoriasis. Unfortunately my hair has been completely altered. I have been off Acitretin five months now the psoriasis returned almost immediately but my hair had not returned to normal. Really depressing, I just hope in time it goes back to it’s original state.
Posted Wed 13 Mar 2024 18.25 by Bev
People really should be warned about hair loss on this drug instead of being mislaid
Posted Thu 14 Mar 2024 08.37 by rapture83
Hi,
I’ve seen a few people now comment on the hair thing, I did ask my dermo about this and he said to me it’s very uncommon that you would lose all your hair, concerning seeing these comments tho. I’m just over a week in this med, how long into it did you notice hair loss? Did you have success in clearing your P on it?
I’m already getting some symptoms early on, lips are already dry which need constant lip bam and the past 2 days I’ve just felt a bit crap and down, wife said I’ve not been the same, she could tell right away. I’m also getting some chest discomfort, not painful but it’s like I’ve kinda hit heartburn and my face seems a little more red than usual. It could all be related or I’m putting 2 + 2 together and getting 5. On the plus side after a week all my patches are practically smooth and not as red as before so something I think is happening.
It’s a bit annoying if this worked for you but due to side effects you had to leave it, typical really, I’ll end up the same if that’s the case but at least it’s 1 step closer to bio’s which I recon would be next for me!
Posted Thu 14 Mar 2024 09.11 by Bev
@Rapture my first side effect was dry lips. Then sores up my nose ( still have them), dry eyes , very sore ears. All within two weeks.
It cleared my psoriasis on my hands and feet but at week 7 i took a severe reaction with psoriasis all around my neck, chest and around my hairline. Smaller bits on arms and legs. I mentioned hair loss to my dermo before i started and was told its not a side effect but steer clear of stress.
Again at week 7 i noted my hair thinning and now i can see my scalp all over my head. I stopped it at week 7 to my dermos annoyance . It is quite obvious by the posts here hairloss is indeed an side effect !
I also had terrible shortness of breath .
My toe nails and finger nails are also wrecked which weren't prior to this drug
Posted Thu 14 Mar 2024 09.18 by Bev
@Rapture I was on acitretin 7 weeks and I am off it 8 weeks . My hair is still falling out and its very dry. For me it has caused me more issues than I originally had. I am on list for biologics but I might just forget the whole process .
My added problem was I was unable to contact my dermo when it all went wrong .
I sincerely hope it works for you x
Posted Thu 14 Mar 2024 09.24 by rapture83 (edited Thu 14 Mar 2024 09.31 by rapture83)
@Bev thank you for the reply!
This will be day 8 of taking it, as I say I’m starting to get a bit concerned with this drug and I’m now beginning to think if I would have been better just staying on MXT than this, my Dermo said this is prob the least harshest on your body, liver etc…so that why I ended up going with that. All my patches practically where peeling off after a few days on it, I was in a shower and removed them all within 5-10 mins, usually that’s a 45 min job, it’s obv already doing something but unless these side effects shift I’m not sure if I’ll continue. I’m already kinda losing my hair as it is, I don’t need even more stress on it.
That’s a shame you ended up with a reaction and getting P in other places, for me I’ve got patches everywhere bar my face, neck, upper torso and genitals. I did have it there before until phototherapy cleared me bar my lower legs but it all came back on my legs n arms, not as bad as before but still bad, it’s not appeared in the other places tho so the photoP has helped in that aspect!. It is excellent, it’s a bit of a pain having to go to your hospital 3 times a week for it but it clears you and you have a nice tan also n look great, it is however like putting a plaster on a large open wound, unless you can keep it going it will come back but of course due to “the rules” they can only give you so many sessions then that’s you for a year! Hopefully you get a block of sessions to give you relief for a small while.
I think my plan is to start saving for a home light unit, I have a small handheld UVB lamp which does work well when used but it’s too time consuming and a pain doing it, I’m going to start using it on my arms and lower legs only now I’m on this med, basically where shorts n t-shirts will show for the summer approaching and see if I get good results. I really want a larger unit tho that I can simply stand in front of for a few mins front and back then done then that way I can banish all of these horrendous meds and lotions!
How are you getting on now? What treatment you doing?
Posted Thu 14 Mar 2024 09.34 by Bev
@ Rapture i am just using the 4 creams atm. Diprosalic , dermovate, audovate then eumovate. I saw my dermo last week she didn't even bother to look at my scalp just said she thought i would have been bald because i requested an appointment.
I am going today to buy a wig my hairloss is that bad.
I have had psoriasis on my hands about 27 years . I only developed it on my feet in last 18 months. I paid for a private appointment as I was only ever given creams. I have never had the light treatment but i think i will invest in a lamp.
Rapture are you male or female ?
I am a 58 year old female
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