Acitretin diary

1 2 Next Last

Posted Mon 30 Oct 2023 13.05 by kiloran (edited Mon 30 Oct 2023 13.18 by kiloran)
From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023

I'm newly prescribed Acitretin and have been taking it for a week. One of the things I find you often don't know is what the initial stages of a treatment should look like so I thought it would be useful for others if I document what's going on. I know everyone reacts differently but hopefully this is useful. I'll aim to update it weekly. Background: 53yo male. Symptoms first started in January 2023 Diagnosed as "standard" plaque psoriasis June 2023 Enstillar prescribed and cleared plaques very quickly - a couple of weeks. Lower back with a few small patches on limbs Feet flared massively in late August 2023, diagnosed in late September as palmoplantar pustular psoriasis. Both feet completely covered, cracked, fissured, oozing, agony to walk on. Left foot about 4 weeks behind right in terms of progression. Acitretin and Diprosalic prescribed by NHS dermatology 23/10 Week 1 observations: Day 1 - First dose (25mg daily). Headache within a couple of hours but in a lot of pain anyway from the hospital visit and needing to walk on my feet. Day 2 - Quite itchy in areas I'm not normally itchy - upper legs, scalp, elbows. No headache Day 4 - Upper legs peeling extensively front and back. More like a sunburn/eczema peel than psoriasis. Not particularly itchy. Huge amount of flaking. A couple of acne-style whiteheads. Day 5 - feet already improving rapidly but not sure if this is Acitretin or Diprosalic. Peeing for England, possibly a sign of inflammation reducing? Five times in one night despite not drinking much. Normally I can easily sleep through without needing to pay a visit. Day 7 - Legs stopped peeling, now just small "islands" of flaking. Interestingly the small areas on the legs which were plaque psoriasis and treated with Enstillar have peeled for the first time in a couple of months but with no reboot of symptoms General wellbeing No headaches other than first day. No dryness other than a slightly dry throat in the early evening. Bowels slower than normal but no big issue. No sign of other common side effects.

Posted Mon 30 Oct 2023 13.14 by Charlton

Thanks for your daily report, it's very helpful to all , good luck with the continued recovery.👍

Posted Mon 30 Oct 2023 13.35 by Aaike
Have palmoplanter psoriasis

Pleased toq hear you've had improvement on Acitretin. I started palmoplanter psoriasis in Aug. 21 and for a while the GP surgery kept saying it was Eczema. I finally managed the referral to dermatology and was given enstillar and diplosalic. The diplosalic made no noticeable difference. I then had 3 months of PUVA but my skin was burnt, despite the nurses taking great care. I have very fair skin. At one stage both hands and feet were cracking and bleeding and, like you, there were times I could barely walk Back to Acitretin, I started it in mid August but within days, developed a circular rash on the inside of my left arm. I kept a photographic record and was advised to discontinue after only 4 weeks. I was also in 25mg. Within 10 days my hands peeled with my feet improving a week longer. Becsuse of the time it was in system my feet almost completely cleared. A few weeks later it started to regress, but now is largely OK Unfortunately the patch on my arm is growing and painful. Thankfully I have an appointment on Friday so can hope for something to manage my arm Psoriasis seems so unpredictable and painful. Hope Acitretin works for you. Jane

Posted Mon 30 Oct 2023 14.45 by kiloran
From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023

Thanks for sharing Jane. There's not much info about PPP and the progression is quite dramatic to say the least! Hope you have a good outcome from your appt. My GP didn't recognise it initially - thought it was fungal - and neither did a pair of general and orthopaedic registrars when I ended up in A&E with an infection.

Posted Mon 30 Oct 2023 14.54 by Aaike
Have palmoplanter psoriasis

I hope it works for you. My hands have remained clear and they were covered. It's very hard when hands and feet are involved Take care

Posted Sun 5 Nov 2023 20.49 by mt382 (edited Sun 5 Nov 2023 20.49 by mt382)

So, I'm four months in (risankizumab is replacing it next month). Acitretin is strange. My plaques are much flatter and less red, but they are more diffuse. Guttate has also taken over my body since starting them. The only benefit is that it got me onto the injections. I wish you luck but have a plan B, and keep in touch with the dermo. Side note: I don't have pustular P (which is where acitretin shines), so hopefully it helps you more!

Posted Sun 5 Nov 2023 21.34 by kiloran
From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023

It really does seem that what works for one person doesn't work for another, which proves how much more there is to learn about these conditions. I'm now two weeks in and still no unpleasant side effects and plenty of positive progress on my feet and hands. Pustules have almost gone from hands and my feet are improving rapidly. I'm a bit itchier than I was and I've got some sort of flare on my thighs, it's almost like acne or insect bites or hives, definitely not plaque-like. I've got a dermo followup in about ten days which is the prep appointment for PUVA I think.

Posted Tue 7 Nov 2023 20.52 by kiloran
From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023

Since writing my last update I've developed a pinprick flat pink rash on the inside of one forearm. It's slightly itchy but not too bad. Randomly distributed and not associated with hair follicles particularly. No temperature and it passes the glass test. Doesn't look like any pictures of psoriasis that I've seen. It's closest to guttate but the spots are too small and they're flat, not raised. Guess I'll contact dermo tomorrow.

Posted Tue 7 Nov 2023 21.02 by Aaike
Have palmoplanter psoriasis

This is exactly what happened to me☹️ my rash started inside the elbow bend of my left arm. It was roughly circular so the dermatology consultant told me to stop Acitretin. The first skin scrape came back negative but after am appointment last week they have taken another skin scrape and I'm awaiting the results. The area has expanded and was painful, stinging one moment and itching another. My latest cream has greatly improved it. Do make sure you get an appointment. I kept photographic records and forwarded them to the dermatology dept. Hope you get sorted

Posted Tue 7 Nov 2023 21.09 by kiloran
From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023

Interesting, thanks. Mine is random, like having been spattered with paint. Mildly itchy but tolerable, certainly not as bad as an insect bite or nettle sting. Flat and shiny. Fortunately have an open line to dermo so can send them pictures.

Posted Thu 23 Nov 2023 12.51 by kiloran
From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023

So, after 4 weeks the rash has persisted and spread. Slightly itchy but manageable. Consultant has dropped dose to 10mg per day to see if the rash resolves. On the plus side feet are very much better with all pustular areas clear. Admittedly it looks like they've been replaced with plaques but they're well controlled with Cetraben four times a day. I'd like to be fully clear but this is far more tolerable than the pustular version. See how it goes. Both feet essentially have new baby skin so it's not surprising it's reacting to being walked on. Also recommended a trial of Enstillar (which I already use for plaques) on my troublesome thumbs - I'm close to losing my left thumb nail which is a bit scary.

Posted Sun 24 Dec 2023 12.43 by kiloran
From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023

Been a while since I updated, got a lot going on with the condition. Overall improving but in a two steps forward one and a half steps back kind of way. Had a bout of cellulitis and a quite persistent pustular flare on the ball of my right foot. On the plus side I'm able to walk better and have got a pair of boots on for the first time in months. Even on 10mg the rash is persistent so waiting on a consultant opinion on this. Started light treatment a week ago, going to do a separate thread for that.

Posted Wed 27 Dec 2023 20.08 by kiloran
From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023

Consultant (well, Prof actually - I feel honoured!) advised Enstilar for the acitretin-induced rash. Given it's so extensive and that I react really quickly and positively to Enstilar - completely flaked elbows clear in three days - I'm doing a patch test to confirm. Hopefully then I can clear it area by area because I think there's a rule about body area/dosage and I'm literally covered.

Posted Sat 6 Jan 2024 15.45 by kiloran
From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023

Update. Acitretin induced psoriasis has cleared (in the sense it's no longer producing scale - it's still discoloured) within a week of using Enstillar on it. That treatment really seems to suit me. Now tapering off it on those areas to reduce risk of rebound. Nails are really bad however with several having stopped growing from the base (nail fold). Since starting light treatment about 6 weeks in to Acitretin I've lost three nails on my feet and my left thumbnail. Others will depart soon too. All the nails had some form of nail psoriasis before starting treatment so I think that this is healing rather than a side effect.

Posted Tue 9 Jan 2024 14.47 by Aaike
Have palmoplanter psoriasis

A while ago I mentioned the rash on my arm that coincided with starting Acitretin. After two skin scrapes it was finally diagnosed as a fungal condition. A course of antifungal meditation and a change of cream for the affected area has given full remission. As a result I have been advised by my lovely lady consultant that I can use Acitretin as and when I have a flare-up as the 4 weeks previously cleared my hand and feet, I am relieved to know I can use it again if I have a bad flare up. I have my next follow up appointment next month

Posted Tue 9 Jan 2024 15.15 by kiloran
From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023

That's good to hear. Was it an anti-fungal pill? I'm wondering whether my nail issue might have a fungal component because I've now got five nails across hands and feet with zero growth from the proximal nail fold. The skin there is pink and clear of psoriasis/infection as far as I can tell. Might try chatting to my GP about it although will be difficult because they'll likely just refer to dermo.

Posted Tue 9 Jan 2024 16.46 by Aaike
Have palmoplanter psoriasis

Being referred to dermatology was a life changer. The team are so friendly. The first skin scrape came back negative but the consultant was convinced it had to be that, she personally took another skin scrape and toe nail clippings. The fungal infection was trichophyton interdigitale. I took a one month course of Terbinafine. My toenails were negative for fungus. It seems the rash was coincidental.

Posted Mon 15 Jan 2024 07.54 by kiloran
From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023

New side effect (potentially) for me today, about 16 weeks into treatment Very itchy beard and when I itch there I lose quite a bit of growth (I have a fairly long goatee). Never had this in thirty plus years of having a beard. Reasonable to assume it's Acitretin because I'm not on any other meds. I've also got extensive nail loss from first hyperkeratosis and now no signs of growth from nail fold of the nails I have lost. As to the rest of my condition it's up and down. My partner says that other than my hands and feet my skin is the clearest it's been for months. My feet are much less painful to walk on but still scaling extensively. Hands not good but that is my fault for scratching.

Posted Fri 19 Jan 2024 18.50 by Yacht

Acitretin only has about a 15% success rate for full psoriasis clearance (PASI 100). And it comes with many side-effects, such as depression or liver damage. For me, it's a low-effectiveness, high-risk medication.

Posted Fri 19 Jan 2024 19.07 by kiloran
From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023

Agreed, it's a cheap option but it was all we really had before breakthroughs in the past 15 years. I liken it to chemo vs focused "magic bullet" cancer treatment. Since posting that on Monday I'm now in a full on flare, always surprises me how quickly this condition can turn.
1 2 Next Last

To take part, sign in or register with us