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Autoimmune disease

Psoriasis and acitretin

14 replies

Sillymummies123 · 22/07/2023 08:57

Hi all! I've recently started taking my first ever systemic medication for my psoriasis (acitretin) and its been crazy. Day 3 my plaques all started peeling like they were chemically burned to reveal pink/red smooth skin underneath. I'm on day 10 now and my psoriasis is still there but a little flatter and pinker (ironically looks more obvious to the passer by). I know it can take a few months for the full benefit to be achieved, do am asking for others to share their experiences on this drug if relevant! It would mean to much to me because I don't really know what to expect. My lips are a bit dry so far and I've either got flu like symptoms or have a virus (family are poorly).

Can I also ask anyone who has taken humira for psoriasis to share their experiences. Particularly how they feel. I'm currently retraining as a doxtor and so need to get a feel for how well I'll be able to function on either of these drugs!

Many thanks

OP posts:
Sillymummies123 · 03/09/2023 14:26

Just bumping incase anyone is around.

I'm now about 2 months in. Some fading of plaques but I've erupted in guttate.

OP posts:
RandomMess · 03/09/2023 14:37

That's sounds very frustrating.

Fortunately DH Ps responded to methotrexate and eventually he came off it.

crew2022 · 08/09/2023 21:16

Acitretin worked for me with a mixture of severe guttate and another type of psoriasis. Took about 6 months and I cut the dose down then weaned myself off. Psoriasis completely went after 12 months.
The medication caused my hair to fall out so it looked very thin and I had a dry mouth and more itching. Plus my toe nail came off and my skin on my hands and feet peeled.

glasgow1983 · 08/09/2023 21:22

Acitretin works well for me (30mg daily) and I only get bad flareups if I eat something that I know causes my skin to flare up (sometimes it's nice to have creamy cheese or real butter, I can't help it).

3 months in I was quite clear, the worst of it gone.

Stock up on tins of Vaseline for the lips. You're gonna need it. I got really dry eyes at the start (8 years ago) and used eyedrops from Tesco, but that doesn't seem to happen any more.

Sillymummies123 · 09/09/2023 06:44

Thanks all. I'm about 2 months in but my psoriasis is trying very hard to flare. I'd say acitretin is sort of... blunting it. Plaques are still coming, guttate is actually worse than its ever been - all over my torso - but the plaques are a bit less thick (more itchy though, so instead of of thick slightly white and camouflaged plaques, I have a LOT of blood red and incredibly itchy psoriasis). My skin has been relatively bad but stable prior to starting, and this never before seen torso eruption can't be coincidence and must be caused by the drug.

If not for can after can of enstillar at the moment i think my psoriasis would be awful, which isn't a great advertisement for a drug with such a harsh impact on the liver and heart. Acitretin also absolutely flattens me. I'm so tired all the time, not just emotionally but my muscles.

Can't wait for the biologics to come.

OP posts:
glasgow1983 · 09/09/2023 10:24

How awful. And the Enstillar will thin out your skin too. :-(

Have you tried excluding food from your diet to see if it makes a difference? The consultants always told me that there is no link, but I've found that lactose and gluten both coincide with terrible flare ups for me.

Sillymummies123 · 09/09/2023 13:23

glasgow1983 · 09/09/2023 10:24

How awful. And the Enstillar will thin out your skin too. :-(

Have you tried excluding food from your diet to see if it makes a difference? The consultants always told me that there is no link, but I've found that lactose and gluten both coincide with terrible flare ups for me.

I haven't, no. Not to sound ungrateful for your advice (i am grateful), but I'm personally very much in the 'specific individual foods make no difference' school of thought (I have my reasons - biology graduate, current medical student - I've picked up a pretty good overview of nutritional research and autoimmunity).


I have stopped a bottle of wine a day habit, but it's make absolutely no difference to my skin and I'm 2 months in. I've also been eating almost immaculately- loads of fermented foods, about 10 different plants minimum a day, etc - again, not really different. I put this guttate flare down to a combination of the acitretin (I've read mixed reports of worsening on it, at least at first) and Sun damage from previous UV therapy via the Knopflwbejefjrjej (can never remember the spelling) effect.

Also, even if specific foods (the classic trendy ones I see on boards seem to be "nightshades" and "dairy) cause flares, I wouldn't exclude exceptionally healthy foods like mould ripened cheeses, yoghurt, kefir, tomatoes, aubergines, peppers etc., and would opt for targeted biologic therapy anyway.

Autoimmunity is the worst isn't it? Our body's work fine, but their targeting system is a bit broken so you have to disable the normal healthy processes to treat the subsequent illness :(

OP posts:
Lillipops · 09/09/2023 13:59

I was on acetretin for around 4 months. My hair fell out, my lips were so sore and dry, I was constantly exhausted and felt ill it also made no difference to my psoriasis. Methotrexate felt like poison horrible drug. I've pretty much tried everything and now on my 2nd lot of biologics which are working well. I've still got some scarring but no flakiness, my hair is very weak and breaks easily, I think it makes me tired but out of everything I've tried the biologics have been life changing. Had psoriasis since I was 12 so 30 years and this is the clearest my skin has been, push for them if you can x

Sillymummies123 · 09/09/2023 14:22

Lillipops · 09/09/2023 13:59

I was on acetretin for around 4 months. My hair fell out, my lips were so sore and dry, I was constantly exhausted and felt ill it also made no difference to my psoriasis. Methotrexate felt like poison horrible drug. I've pretty much tried everything and now on my 2nd lot of biologics which are working well. I've still got some scarring but no flakiness, my hair is very weak and breaks easily, I think it makes me tired but out of everything I've tried the biologics have been life changing. Had psoriasis since I was 12 so 30 years and this is the clearest my skin has been, push for them if you can x

Thank you yes. I discussed my preference for biologics with dermo, and she said I only needed to try one of the systemics to be eligible. She's written in notes that I'm not really suitable for metho or cyclo (patient facing, intense role, can't really afford to be immunosuppressed).

I'm very excited for biologics to be honest. I know your body can neutralise them and then you have to switch, but I'm so excited to just have periods where I don't have to monitor or fear my skin or which clothes to wear.

I often think reports of biologics can still be lingering after effects of the systemics that came before. Hair problems, fatigue etc

OP posts:
Lillipops · 10/09/2023 01:33

They are life changing, I do not know who many rounds of UV therapy I've had and it used to take me longer to get changed than it did to stand in the light because x. I'm facing psoriatic arthritis, I had carpel tunnel in both my wrists, had operations on them both, recently suffered tennis elbow which was debilitating to day the least. My dr has been amazing and I got a steroid injection which has made such a difference. The parts people can't see, unless you suffer no one can understand Confused

Fortboyard · 10/09/2023 17:02

I’ve had extensive psoriasis for decades but kept it in check with lifestyle. The treatments have always sounded worse than the diseases to me!
I do exclude cows milk as this absolutely causes flares (not cheese or yoghurt made with cows milk tho so I continue to eat those). I also limit nightshade veg (eg. hot peppers/chilli/paprika def cause a flare) but eat lots and lots of other veg. I included lots of fermented foods and have been working on my gut health for decades. Had it analysed through Zoe recently and it was rated good and with v few bad bacteria. But, I suspect it took years to improve my gut health, so don’t expect quick results, it’s basically a life long project.
for any of you with psoriasis on your face, I have just found a dream moisturiser which amazingly took away all four large patches around my eyes (which I’ve had for 15 years). Wishful honey balm is my new best friend, just wish I could apply it all over my body but that would be a bit expensive!

Sillymummies123 · 11/09/2023 16:06

Fortboyard · 10/09/2023 17:02

I’ve had extensive psoriasis for decades but kept it in check with lifestyle. The treatments have always sounded worse than the diseases to me!
I do exclude cows milk as this absolutely causes flares (not cheese or yoghurt made with cows milk tho so I continue to eat those). I also limit nightshade veg (eg. hot peppers/chilli/paprika def cause a flare) but eat lots and lots of other veg. I included lots of fermented foods and have been working on my gut health for decades. Had it analysed through Zoe recently and it was rated good and with v few bad bacteria. But, I suspect it took years to improve my gut health, so don’t expect quick results, it’s basically a life long project.
for any of you with psoriasis on your face, I have just found a dream moisturiser which amazingly took away all four large patches around my eyes (which I’ve had for 15 years). Wishful honey balm is my new best friend, just wish I could apply it all over my body but that would be a bit expensive!

Its great that you have identified some personal triggers. I think psoriasis is a complex condition, and everyones is likely to be different. Fundamentally though it is a mistargeting of the immune system / autoimmunity, not a food allergy, and I think its quite in vogue to try to tackle it with diet. It's perfectly plausible that some single dietary aspects can cause flares, but the (rigorous) research generally doesn't identify any food links. However:

I 100% think that overall health contributes to severity, and I am a massive Tim Spector fan / lover of all that it plant variety! (You mentioned Zoe). The impact of the gut biome, obesity, fatty liver on psoriasis and the causal inflammation is definitely a thing. I am concerned, as an onlooker of forums, about the emergence of disordered eating in a misguided attempt to treat psoriasis (not you, at all - but on other forums there are all kinds of threads dedicated to ludicrously restrictive diets. It makes the medic in me sad that people have been let down by the system and feel they are left to manage it alone like this)

I think with me, even if my skin wasn't visibly psoriatic (the disease process will always be there once someone has the malfunctioning immune system), I would still be anxious of the internal systemic inflammation driving heart disease, cancer and metabolic syndrome, depression and in all honesty that's as much of a motivator for me to get into biologics as the skin itself!

I agree though, that in a world where biologics exist I think it's rotten that people have to take metho or cyclo at all - I would whole heartedly argue that those can be much worse than the psoriasis (long term impact of psoriasis on health notwithstanding). I wouldn't try cyclo, and would only try methotrexate to game the system into biologics :)

Acitretin is weird. It sort of... makes my psoriasis much more vulnerable to treatment. Steroids have never touched my psoriasis, but in acitretin I can generally clear a plaque with one or two days application (it comes back though).

OP posts:
Fortboyard · 12/09/2023 00:16

I think people try to tackle with diet because otherwise they have no hope. I tried steroids years ago and they never helped. Gp explained the further treatment choices but they sounded like they had really crappy side effects and psoriasis would come straight back if you stopped so pretty pointless. So I started doing what I could for myself, trying my best to live an anti-inflammatory lifestyle. When I have had periods of totally gluten and nightshade free my psoriasis has been at its best but I don’t keep it up as it’s restrictive and like you say the science says it’s bullshit!
The consistent lifestyle stuff that I do is apparently enough so my psoriasis has been classed as “in remission” but I’m fully aware I’m only managing symptoms not treating the cause. I have complete sleeves of psoriasis on both arms and creeping onto my back, 4 patches on my face, it’s in my ears and scattered over both legs from ankles to hips.
In the last few months it’s started to affect my nails. I saw the gp about it and she said they weren’t too bad but again, I’ve been doing my best to manage these symptoms too. Infra red lamp and dr organic tea tree nail oil has been helping. Two nails have separated over 50% from the nail bed but they’re strong and still a reasonable colour where they remain attached. I’ve had bloods done and they apparently all came back normal but obviously I’m worried about psoriatic arthritis.
i have developed knee problems recently that I was managing well through yoga but that’s getting less and less effective and I’m in pain a lot now. Because I’ve managed it though I still have excellent range of movement in the joint and good strength so again it felt like gp didn’t think it was worth worrying about. I have had an x-ray now and will go back to see gp on weds.
I almost feel I’ve done myself a disservice by managing my symptoms and maybe if I hadn’t I would have had earlier intervention to prevent hidden damage. But then, if inflammation was rampant wouldn’t that show in my blood tests? And then like I say a lot of interventions have significant side effects so they’re not to be used without due consideration. I dunno, it’s very hard to know what’s best.

Sillymummies123 · 12/09/2023 07:35

Fortboyard · 12/09/2023 00:16

I think people try to tackle with diet because otherwise they have no hope. I tried steroids years ago and they never helped. Gp explained the further treatment choices but they sounded like they had really crappy side effects and psoriasis would come straight back if you stopped so pretty pointless. So I started doing what I could for myself, trying my best to live an anti-inflammatory lifestyle. When I have had periods of totally gluten and nightshade free my psoriasis has been at its best but I don’t keep it up as it’s restrictive and like you say the science says it’s bullshit!
The consistent lifestyle stuff that I do is apparently enough so my psoriasis has been classed as “in remission” but I’m fully aware I’m only managing symptoms not treating the cause. I have complete sleeves of psoriasis on both arms and creeping onto my back, 4 patches on my face, it’s in my ears and scattered over both legs from ankles to hips.
In the last few months it’s started to affect my nails. I saw the gp about it and she said they weren’t too bad but again, I’ve been doing my best to manage these symptoms too. Infra red lamp and dr organic tea tree nail oil has been helping. Two nails have separated over 50% from the nail bed but they’re strong and still a reasonable colour where they remain attached. I’ve had bloods done and they apparently all came back normal but obviously I’m worried about psoriatic arthritis.
i have developed knee problems recently that I was managing well through yoga but that’s getting less and less effective and I’m in pain a lot now. Because I’ve managed it though I still have excellent range of movement in the joint and good strength so again it felt like gp didn’t think it was worth worrying about. I have had an x-ray now and will go back to see gp on weds.
I almost feel I’ve done myself a disservice by managing my symptoms and maybe if I hadn’t I would have had earlier intervention to prevent hidden damage. But then, if inflammation was rampant wouldn’t that show in my blood tests? And then like I say a lot of interventions have significant side effects so they’re not to be used without due consideration. I dunno, it’s very hard to know what’s best.

My knowledge of psoriatic arthritis is quite poor, as I don't have it and I haven't covered it for that reason.

I'm really sorry to hear your psoriasis Is behaving so unpleasantly at the moment. To be honest, by "let down by the system" j mean the poor access to dermatologists. That doesn't just affect the actual chance of starting treatment, but what if you don't respond, or the side effects are unpleasant. What's the option then. Wait another 6 months to a yesr for a followup? People (myself included) just feel abandoned, and for that reason I recently went private which is against my moral code, but I found out that I can be barred from working clinically if its active on my hands and lower arms 😮

Lifestyle absolutely helps and there is one thing that's absolutely certain - if you ate crap and didn't exercise your psoriasis, as it is right now, would be much worse. As would your risk of all the health complications of psoriasis.

I can understand not wanting to do the next step of treatment. I managed for about a decade with UV therapy at home. If I'm honest, the therapy never had a great affect on my psoriasis. If I was lucky enough to clear it, some patches never did, and at best I was left with dark skin areas where the psoriasis had been and It would come immediately back when I stopped. It also made me feel like crap - much worse than the acitretin is. The nature of uvb therapy is to give just enough to kill the inflammatory cells in the plaques (they then release loads of inflammatory chemicals causing that "sun kissed" feeling of BLARGH.

Acitretin is fine. I took a week off as I was getting headaches and touchwood they haven't restarted again yet (I'm a fortnight on from my break). Dry lips are creeping back, but my psoriasis is quite flat. I'm finding if I get ill, however, I flare up regardless. As I have young children and work with sick people, this isn't ideal.

I have a few colleagues who are on biologics for other conditions, and they say the side effects are non existent for them, and their own disease are in remission. It's just a cost thing isn't it - you cant stick everyone with psoriasis on them so you have to game the system.

Good luck!

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