What does "improvement" look like on acitretin?

Posted Fri 27 Oct 2023 18.09 by Aaike
Have palmoplanter psoriasis

I have palmoplanter psoriasis and started a low does of Acitretin in mid August. The scales cleared from my hands in sats with my feet peeling soon after. Sadly for me I developed a rash on my arm so had to discontinue and am now waiting to start an alternative I hope it works for you.

Posted Tue 12 Mar 2024 12.57 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 Wed 13 Mar 2024 17.56 by Bev

@ Aaike I too have palmoplantar I was on acitretin 7 weeks. My skin went pink and my psoriasis cleared within 10 days but my lips, ears and nose all dried up. I am off it now 8 weeks as I developed psoriasis on my neck, chest, knees and elbows. It attacked all my nails . My hair also fell out and has continued to do so. I now have to get a wig. I still have issues with my nose and ears. I am waiting on starting adalimumab hopefully in near future

Posted Wed 13 Mar 2024 18.14 by Bev

I also should have added after 5 weeks skin on my palms,fingers and soles of my feet literally peeled off. I have seen two dermotologists since and both were extremely reluctant to admit hairloss was a direct side effect of acitretin . I honestly think this is played down

Posted Fri 15 Mar 2024 16.46 by Steview
A P sufferer for over 30 years, through good and bad times.

@ Bev, although I have trust in dermatologists and good patient relationship with a few over time. I do believe they either tell you what you want to hear or don't know the full facts of side effects. Take acitretin as being discussed, I have expressed my views on this med many times but hair loss is a listed possible side effect and I know from many years experience of acitretin. The amount of people I have read that have had similar also backs that up. Peeling hands and feet is another side effect commonly reported. You can literally peel the skin off. I.m.o it is a nasty drug with too many side effects but is commonly prescribed as it isn't an immunosuppresent so is probably a preferred option of dermatologists compared to the immunosuppresent systemics. I could go on about the side effects. Best of luck.

Posted Mon 18 Mar 2024 07.38 by Bev (edited Mon 18 Mar 2024 07.40 by Bev)

@Steview thanks for your comment. I can honestly say when I asked about the hairloss I was told it wouldn't be an issue and to be free of stress. It was great first 4 weeks but from week 6 and 7 it was dreadful. I couldn't contact anyone my dermo had given me an app in which they could contact me with test results, appointments etc but I could not contact them and the phone was always engaged. It was my local pharmacist saw my neck and she contacted my GP practice. My GP asked for photos ( he thought i had a nurse to contact about issues) he told me to stop immediately . I don't see anyone in here saying their hair ever grew back . I ordered the lamp Rapture recommended I don't think I will be taking the offer of adalimumab as i have fibromyalgia and bowel cancer is in my family . When I read up more on acitretin I saw it affected 50-75% of patients with hairloss. I really don't think I have had much support from the dermotologists i have seen.

Posted Mon 18 Mar 2024 08.02 by rapture83 (edited Mon 18 Mar 2024 08.06 by rapture83)

@bev that’s great you ordered the lamp, keep me posted on how you get on! As I say you’ll start off with low times but you can prob do a bit longer than what the book tells you but after a couple of weeks you’ll be able to do a few mins at a time for each area, don’t do a few mins right away as you’ll burn to a crisp, your skin will need a few weeks to get used to it. Just a heads up that when you do it for a bit longer it will look like nothing has happened but you’ll fine you’ll wake up in the morning and the areas will be red like sunburn, this fades after a few days taking away the P as it fades, it obv comes back tho! I’ve been using mine for a couple of years now and the bulbs are still going much to my surprise! They can be replaced tho! Reading your stats on the hair loss that’s quite scary! I’m glad I stopped it, I already feel so much better today, almost back to normal minus my P! But that chest feeling is all but gone and my lips are just about back to normal bar 1 annoying crack that’s getting lots of lip bam :-)! My face is no longer red or dry/flaky! I’m going to call my dermo number today just to tell the receptionist what happened and that I’ve had to stop it. Are you any closer to starting Bio treatment from the dermo? I’m hoping I’ve ticked all the boxes for it now, the NHS really do dig their heels in before you can get on it tho, I think it costs them a fortune, very annoying as it’s the safest and most effective treatment from what I’ve read other than going completely vegan with a diet or something!

Posted Mon 18 Mar 2024 08.22 by Bev (edited Mon 18 Mar 2024 08.32 by Bev)

@Rapture glad you are feeling better and the pain is gone. I still have the dirty nose and hair still falling out. I was sent a message on the app i was to get adalimumab on 7th march few days later it was cancelled due to restructuring. I rang last week but so far no word of anything ( i am in Northern Ireland so bank holiday today) but I don't think I will bother with biologists. This episode with no contact with drs has put me right off.

Posted Mon 18 Mar 2024 09.08 by rapture83

Oh I see, such a strange set up you have over there, I’m in Scotland and basically once you have 1 dermo appointment they just book you in for another one 2-3 months down the line so your always on their system and any meds I’ve asked for, like for my scalp, creams etc are given with no questions asked! The lamp should be a game changer for you as your not covered head to toe, good luck and keep me posted!

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