Acitretin medication - first day - anyone else on this?
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Posted Fri 2 Feb 2024 21.17 by danib_xo
Hi guys, hope everyone is hanging in there!
I've has psoriasis for about a year now and just recently it has spead to my whole body. It started out on my scalp and I was trying multiple different serums, shampoos, and creams with little to no help at all. Recently my derm recommended Acitretin, today was my first day taking it. I read the reviews and did my research on it prior to starting it - but i'm not gonna lie it does scare me with all the side effects. Does anyone else take this medication? If so, how are you feeling? Is the side effects really as bad as they seem?
I really did not want to get on medication but the psoriasis seems to be taking over my life. I will try anything I can get my hands on.
Lemme know! Thanks guys
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Posted Fri 2 Feb 2024 21.26 by mt382
Hi there,
You're probably going to get lots of doom coming your way, as forums are bias toward more severe psoriasis, which is treatment resistant.
It's reasonably effective for a lot of people.
Dry lips is very common and usually necessitates lots of balm on hand.
It can caused raised intracranial pressure which sounds scary but is usually mild. I had almost daily headaches for the first two weeks which I managed with NSAIDs and was fine thereafter. Also, many side effects clear as your body adjusts to the presence of the drug.
It worked in terms of thinning my plaques, but didn't delay the progression of my guttate. Everyone is different though.
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Posted Fri 2 Feb 2024 by kiloran
From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023
Have a look for my "Acitretin diary" post for my experience, which has been mixed. It's definitely changed things and mostly for the better but I'm being moved to a biologic because my psoriasis is so severe.
First couple of days I had headache and chills, nothing major. Then I developed a follicular rash/scale and went really dry. I'm now tapering off on a very low dose of 10mg, this is mainly due to hair loss in my beard and losing my nails. Nail loss isn't necessarily down to Acitretin because I've got so much other stuff going on.
Do stick with it though because it can be very effective and if there's one certainty about psoriasis treatments it's that what doesn't work for one person will work for another. It's been a stepping stone to biologics for me so definitely no regrets
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Posted Sat 3 Feb 2024 09.42 by Steview
A P sufferer for over 30 years, through good and bad times.
Sorry, I am one of the doom merchants regarding acitretin.
First off let me say side effects affect people in different ways, some get them some don't. You may be lucky and only suffer mild effects.
Positives, it isn't an immunosuppresent unlike most other systemics and biologics. Clearence wise, never completely clear but most of the time gave some positive results.
Negatives, of 20 years taking acitretin my everlasting memory is not good. Sadly the side effects started quickly and some had a negative long term impact on life.
Fortunately now there are more medications and if you can't tolerate acitretin they may move you to something else. Best of luck.
Posted Sat 3 Feb 2024 12.58 by mt382
Following on from Steview's comment, Its a fine medication short term (e..g a few years) if it works for you. If not, don't be shy in going back. Even if it gets rid of 70% of the psoriasis, say you aren't happy with the coverage you have left.
It's not great for the liver amongst other things. Obviously they monitor your enzymes, and just as 3 years of having a few beers a day is unlikely to destroy your liver, neither will acitretin. But if someone came to me and said they'd taken it for 30 years, and were anything other than the epitome of health, I'd be worried.
Enjoy it for a few years if it works!
Posted Sat 3 Feb 2024 14.54 by Steview
A P sufferer for over 30 years, through good and bad times.
@mt382. We have discussed acitretin previously, especially during your journey.
In hindsight I don't know why the dermatologist were happy to keep prescribing acitretin, maybe due to my blood results P3NP etc being acceptable.
It was in the first couple of years the common side effects hit me. I also got not so comon effects which weren't nice. To cap it off in hindsight acitretin was never as effective as mtx, cyclo or stelara currently. Years after I realised that this nasty drug caused me so many problems some long lasting Inc head aches and mood swings.
I would personally choose the others listed over acitretin if given an option again.
Posted Fri 9 Feb 2024 00.04 by Bev
I started acitretin in October i mainly had psoriasis on my hands and feet a little on my scalp. 20mg per day 7 weeks in psoriasis appeared everywhere but cleared on my hands and feet. By week 9 most of my hair fell out. I stopped taking acitretin 4 weeks ago and my hair is still falling out. I also had awful mood swings
Posted Wed 14 Feb 2024 18.12 by Lizzywales
Had psoriasis for 50yrs
I was on acetretin for 11 years . I had dry eyes and to begin with flacky skin on the soles of my feet . Other than that I was fine , some side effects are worth putting up with in regard to to positive effect on tackling the psoriasis.
Posted Tue 12 Mar 2024 10.18 by rapture83
Hi there,
I started this last week for my guttate psoriasis which is everywhere, a mixture of bit patches, small and pin spots….so far I’ve tried Otezla, didn’t do anything for 6-7 months, went onto MTX, came off that as it made me feel ill, had phototherapy which was great but it came back and now trying this med. I’ve been on it for 1 full week now on 25mg per day. So far zero side effects other than my lips are getting a tiny bit dry like I’ve read happens to almost everyone so just got lip bam in my pocket at all times. One thing I noticed this morning before my shower was that the patches on my arm are completely smooth and half of both batches are pink with some red bits there, I also noticed that almost every single one of my patches and spots all over my body, the layer of skin on top of them all was soft and literally came off with one finger rub so when I was in a shower all scales were removed with ease, all patches are completely smooth after that, it was almost as if they were completely moisturised or I had just had a hot steam session at the gym, usually mine are hard and rough and sore/itchy and I moisturise every single day and use Enstiller foam the odd day.
I’m not sure if this is Acitretin already kicking in? If I’ve just been moisturised really well the past week or if I’m just having a good morning, it’s only been one week so I have my doubts, is this a common sign it might be working? Thanks all
Posted Tue 12 Mar 2024 16.26 by Bev
@rapture83. Hi within a week the changes were fantastic for me. My hands and feet were well on their way to being normal. So it could well be its going to work brilliantly for yourself !
Good luck
Posted Tue 12 Mar 2024 17.44 by rapture83
Thank you for the reply, I’m thinking it has to be the meds as my patches never go that way with the skin practically peeling off all the patches, basically every single patch large and small the skin/scale just removed with ease, due to removing all in the shower which was very fast I’ve not been itchy anywhere at all since my shower this morning which has been fantastic! I’m never itching like mad but every so often every hour or 2 it’ll happens! Only other time I can ever remove scales is in the shower and I need to be in a hot one for over 10 mins before I can removed them, just a bit taken back with what I saw this morning!
Praying it’s working rather than it just being a good morning, we all get them once in a blue moon ☹️
Posted Tue 9 Apr 2024 13.58 by Rads68
Hiya.
For what it's worth, I've been on Acitretin for 5 weeks now, 20mg daily, only side effects dry lips and sore inner nose for first few weeks. Just had first set of bloods done so hopefully no damage there. Meant to be doubling the dose now but very wary. Waiting to wake up and find hair all over my pillow bu it hasn't happened yet. the consultant who put me on it said hair loss was rare and she's seen more mxt patients with hair loss than Acitretin. Who knows, probably just trying to convince me after I told her I'd read so many horror stories online. A lot of my P seemed to clear pretty rapidly, within the first couple of weeks, but its returned with a vengeance over my butocks already, much to my dispair. Torn between hoping it works, and hoping it fails so I'm a step nearer Biologics. Finding it difficult to cut out weekend drinking, slipped up couple of times, What A journey
Posted Wed 10 Apr 2024 09.27 by Bev
@Rads68. I never took alcohol . Mine started to clear up within a week on my palms and soles of feet. Then there was no appointment made for me to get next batch so i had to take every other day. At weeks 6 i had it on my knee, elbows, outline of my face, my neck and chest were really flared. ( i will post pics if i figure out how to do it) . I was on 20mg.
Im in Northern Ireland my dermatologist has ignored calls and emails . So i paid again to get advice yesterday. My appointment is through for adlimabub ( mid may) but i am supposed to see a cardiologist and respiratory before im giving it, no sign of those appointments yet.
Dermo yesterday wouldnt/ couldnt say acitretin has caused my issues but I think i am done with dermos. Trying to contact them is so stressful.
I think if i were you i would be asking for a lower dose than 40mg if they can do it.
My hair is still falling out, i am still short of breath,my ears aren't right yet either. Hair has began to appear under my arms and personal areas but nothing on my scalp.
Keep us posted on your progress and good luck !
Posted Wed 10 Apr 2024 11.01 by Rads68
Hi Bev, sounds like you've had quite an awful journey. sorry. Uk Dermos are really good (mine is, anyway) with appointments and repeat drugs. So I'm on 40mg presently and dermo recomendation is to double it now, around week6. I could easily half it to 20mg, (just take 1 tablet) but I kinda want to prove it doesnt work succesfully for me so I'm a step nearer biologics.
Posted Wed 10 Apr 2024 11.11 by Bev
I am in UK . Apart from my marriage breakup 20 years ago this has been the most stressful and anxious time of my life.
I had asked to attend my local hospital i can walk to it. They didnt send my details over so i was lost in the system so there was a break in meds. I had to chase up appointment then they cancelled it without reason. So atm i don't know where i stand .
The dermo for biologics spoke to me and said she was referring me to the above but could offer no advice on the hairloss.
I now have no faith in them . Dermo i saw on NHS lied to my face and her boss is ghosting me.
I bought a uvb lamp another guy on here recommended and im just moisurising atm.
I have never had dry hair in my life until now and i am off that drug almost 3 months
I really hope you get biologics .
Posted Wed 10 Apr 2024 11.21 by Rads68
Bev, I think I'll consider weaning off rather than upping the dose. My flare up has resulted in my buttocks so sore , red and itchy. This was the reason I was put o them in the first place .
Posted Wed 10 Apr 2024 13.09 by Bev
@Rads you know your body better than anyone . I was on 20mg and i just stopped after speaking with my GP in hindsight i maybe should have weaned. On 20mg i was clear by mid week two.
Im not a candidate for methatraxate but ive been offered adlimabud ( humira)
I just met the illusive dermo in hospital corridor i fought the urge to ask her was i bald enough yet for her attention .
Btw i am a 58 year old female
Posted Wed 10 Apr 2024 13.12 by Rads68
I’m really at a crossroads. Do I up the dose to try and clear, or reduce the dose because of the flare up.
More spots over lower legs appeared overnight. 55yr old male
Posted Wed 10 Apr 2024 13.24 by rapture83
Horrendous drug, well for me anyway! Posted a while ago that I had just started it and my spirit was raised with all patches peeling but that soon turned into misery…1-2 weeks later some red spots started coming back, my whole body was constantly itchy, I developed a pain in the middle of my chest, directly below the ribcage, my lips were a mess, dry constantly with some really sore cracks and that was with constant lip bam attention, the palms of my hands started peeling and my face was red, like I had sunburn. I stopped it immediately and about 1 week later all symptoms were gone bar the hands and lips, the lips are fine now after a few weeks off it but my hands are still peeling but not as bad as before, I maybe stopped it in time before it reached my hair!
I know this drug can effect everyone differently but for my only being on it a short amount of time with those side effects I decided it was actually worse that just the P itself!
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