Hi all,
I know everyone responds differently to all meds, but for those who have improved on acitretin, what did the improvement actually look like?
My plaques have already peeled and are pink and smooth - is that going to be it, or do plaques disappear and return to normal skin?
I would be grateful of all feedback!
Posted Sun 23 Jul 2023 19.30 by VARSHA P
Hi
I am going to start Next month.
Do you have any side effects??
1Posted Sun 23 Jul 2023 19.44 by mt382 (edited Sun 23 Jul 2023 19.45 by mt382)
It's hard to tell. I either had an obscure flu like illness last week, or my side effects were flu symptoms 🤣🤣🤣.
Day 3 my plaques literally peeled like a chemical burn. Has been smooth (but still pink psoriasis skin since). My lips are dry, but no dry eyes, palmar peeling yet.
And, either because I was ill or just because of the tablets, I've had a migraine every day (I get migraines quite frequently anyway so again - time will tell)
Posted Sun 23 Jul 2023 20.35 by Steview A P sufferer for over 30 years, through good and bad times.
Hi again mt382. Well it was many years ago I took acitretin, although I do remember the first year taking it.
After some time I noticed the plaques were thining out and as you say go pink as the new skin starts to form. The colouring did subside to normal skin colour eventually but during that phase my skin on hands, feet and arms just peeled off. My feet were a state at one point basically like blisters then the skin came off in clumps.
You mention migraines, yes that was one of many side effects I suffered. Funny stopped getting them when I ceased taking acitretin.
In all the years I took acitretin, clearance was nowhere near as successful for me as other systemic and biologic treatments.
Hello again, Steview,
Yes - I'm hoping I am spared some of the side effects. I have a review in 4 months and the tone of the arrangement was very much "let's get thus done so we can apply for biologics" so, in that respect, I feel quite good about the treatment as it either works and great! Or the side effects aren't tolerable/ it doesn't work and I move on.
It would be nice to remain non-immunocompromised though so I hope I do have some success
Posted Sun 23 Jul 2023 21.01 by Steview A P sufferer for over 30 years, through good and bad times.
Fwiw, I was on it for almost 20 years. Far too long for what good it was doing during the last few years taking it.
Hindsight always a good thing if I had know how well the other treatments I tried were, I would have pushed the dermatologist to stop it sooner.
I still suffer long term side effects even after 15 years stopping.
Posted Sun 23 Jul 2023 22.26 by VARSHA P
Hi Did any one had hair fall as side effect?
Steview as you had taken this long, how much percentage of your psoriasis were cleared.
Also what side effects you still suffer.
Thanks
VARSHA P, I'd like to weigh In on hair loss if that's okay, not from personal experience obviously.
I've seen two different dermatologists this month (private), and I asked both this question. The first said she treats both psoriasis patients and acne patients with acitretin (off label) and that hair loss in both is very rare.
The second (who is the senior consultant running the clinic and who previously ran the psoriasis biologic clinic for the South East) said that it is very rare, and I quote "I don't actually consider hair loss a side effect of this drug because it IS so rare - some older women might have some shedding, but otherwise i don't really see it".
I'm only saying this because this is a forum - the type of people that frequent a forum are those with severe, treatment resistant psoriasis and the type who have had a rough ride with treatments (e..g a bias towards those for whom treatments haven't worked, and who have had awful side effects).
I only say all this because I had googled all the previous threads on this forum for Acitretin before taking it, and my perception before talking to the dermatologist was that hair loss was inevitable on acitretin, which is at odds with the above
2Posted Mon 24 Jul 2023 11.13 by Aaike Have palmoplanter psoriasis
I am due to start acitretin as PUVA did not suit me. I have palmoplanter psoriasis and it is so debilitating. I have been worrying about the long list of common side effects so welcome support.
I'm only 11-12 days in but I have the occasional headache (it's really important to note rhat they're the same headaches I've had my whole life, but more frequent this week), dry lips, and that's about it for me so far. I am likely to get others as the drug will now be at peak plasma level and doing its thing. The effect is quite delayed but I feel basically completely normal so far. Wouldn't worry as you could always stop if your experience isn't the same!
1Posted Mon 24 Jul 2023 13.50 by Steview (edited Mon 24 Jul 2023 13.56 by Steview) A P sufferer for over 30 years, through good and bad times.
@ Varsha and mt382
Firstly percentage of clearance probably around 60% although went up and down at times.
Side effects and I list this as you have asked and not to put you off.
Cracked lips
Dry crusty bleeding nose
Curly hair followed by some hair loss and thinning.
Severe head aches (didn't have them before acitretin and don't now)
Peeling of skin on arms, hands and feet.
Within a year of starting I developed two ingrowing toenails (big toes) I had to have the nail beds removed.
Once I stopped and reflected on the time on acitretin I also put mood swings as another effect.
I still get crusty bleeding nose even after all these years.
Now of course everyone reacts differently included side effects they suffer. Maybe I was unlucky for 20 years, I know it was too long. On the social media, fora and research I read all the side effects I suffered have been listed by other patients previously. So I don't think they are coincidental.
As far as hair loss or thinning, unfortunately if you read user reviews this may be more common than what the consultants are informing you. They don't want to scare you off before you start taking it. Don't get me wrong I didn't lose all my hair and as a guy then in my 30s maybe naturally I would start to thin out. It was the hair turning curly that surprised me and I actually liked that at first but then it became brittle and thinned out.
Best of luck to both of you.
To be honest Steview, I do think I'll be adding mood problems to my list of side effects if this week is anything to go by.
My dreams are a bit weird, I wake up exhausted and I'm noticing a creeping anhedonia which is not inkeeping with my personality the last few months! I also have this awful change to my sense of smell. Like faecal cheese, which is constant.
2Posted Wed 26 Jul 2023 19.09 by Steview A P sufferer for over 30 years, through good and bad times.
Sorry to hear that mt382. I wouldn't have gone as far to say I suffered anhedonia although I know I got frustrated and at times more angry in certain situations. If that continues may be best seeking advice from your derm.
I don't remember the smell.
My personal opinion of acitretin is it is a nasty drug so I am not surprised with what you say. Good luck.
Well, it's looking like it might be a moot point as I've just had an email asking me to get further blood tests as my ALT is raised 😅
Posted Sat 5 Aug 2023 16.53 by Yacht
Academic studies suggest acitretin only has a low 14% chance of full psoriasis clearance (PASI 100). It also has many side-effects, such as liver problems or mental health. UK doctors like it because it is (very) cheap.
For me, acitretin is not worth the risk, relative to the patient benefit.
Posted Sat 5 Aug 2023 17.56 by mt382 (edited Sat 5 Aug 2023 18.15 by mt382)
This thread was sort of side tracked from the "for those who saw improvement, what was that like" beginning 🤣🤣
Complete clearance is quite a high target to aim for IMO. If you end up looking for systemics then your severity would make that difficult either way? The chance of achieving a 70-80% improvement is higher, and even if you hit 50% that's better than futily applying lotions.
It is, however, lower than the other systemics, but has the wonderful aside of not rocketing your risk of blood and skin cancer.
It's also "not for me" to be honest, but one would hope given then ladder of efficacy/risk that psoriasis treatments follow it would at least be more effective long term than topical. Its gotta be done though, hasn't it, to access the mabs. My consultant also viewed it as a stepping stone, though did half-heartedly offer that some people clear on it.
The absolute deal breaker for me is the CVD risk. With the heart disease and metabolic syndrome association, I want something to calm the inflammation (biologics) long term and reduce my heart disease risk. There's only a very minor anti inflammatory effect of acitretin, and it negatively impacts cholesterol etc.
Oddly - my plaques all peeled, flattened and faded weeks 1-2, but on weeks 3-4 I have guttate rearing it's head and my faded plaques are thickening and getting angry again so perhaps my body is "restoring balance" to the tablets someone.
Edit: also my side effects have cleared entirely. Feel right as rain. Lips aren't dry anymore. Headaches been gone for around a week. Psoriasis also taking a step backwards ans getting a bit worse. As I say- my body might be particularly good at opposing the drug (upregulating / downregulating some receptor or other)
Well, final results are in (3 months of acitretin) Dry lips are present but not a problem.
Still exhausted with daily headaches.
Worst of all - my psoriasis has flared beyond anything before. Its never been on my torso, but I am absolutely COVERED with guttate on my front and back, and as a result I feel horribly unwell. It's back to university today and I couldn't feel further from being ready!
Posted Tue 26 Sep 2023 01.22 by Yacht
Get well soon, MT382.
Posted Mon 23 Oct 2023 16.33 by kiloran From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023
Not so much an Acitretin improvement post (just started on it for PPP) but to echo the OP and other replies my plaques (lower back mainly) cleared in the same rapid way on Enstillar. Stopped crusting cycle and just left with pale flat pink non-itchy "scar" within a week. Now I've tapered off Enstillar they've remained stable.
Posted Fri 27 Oct 2023 18.03 by mt382
I'm still on acitretin, though am now awaiting risankinzumab. It did basically nothing for my skin bar making me much more responsive to my home NB-UVB unit and steroid cream. As such, it's definitely been "better than nothing" as I am better than nothing (apart from the guttate eruption).
I'd definitely do it again to fulfil the requirements for biologics, and (although I haven't tried metho or cyclo) I feel like I would have felt worse on them based on the immunosuppression and the sheer volumes of colds I've had.
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Posted Sun 23 Jul 2023 19.16 by mt382