Acitretin???

Posted Mon 10 Aug 2020 09.33 by SharonG

Hi Has anyone had experiences of this drug? 1. Side effects? 2. Does it work or at least help? 3. Dosage? I have read up on it and really don't fancy taking it!! But PPP is so bad right now I am willing to try anything :( I have it on my FEET!! And I really am struggling to just walk!!! I am - or was - really active - I can walk forever but this recent flare up has lasted 6 months now - never has it been so bad - to be honest this week? I have left off ALL cream ointment everything etc. It is very dry so I just soak my feet in water - I am sure this is not the answer though? :( I am just FED up of creaming!!!!! :( Thanks in advance.

Posted Mon 10 Aug 2020 09.48 by scarletsmummy

where do i start ................DO NOT TAKE THIS DRUG i did 6 months on this from last September up until March this year 1. I lost all my eyebrows 2.i lost all my eyelashes 3.my hair fell out in clumps 4 Every other bit of bodily hair just fell out 5. my skin was so sticky i could not even hold anything without using talcum powder 6. my muscles in my sciatic joint ceased up and i now suffer from severe pain in my sciatic joint Even now my hair is in such bad condition i have had to have it cut really short to give it a chance of recovering it feels like straw If i had read the side effects of this drug i would NEVER have put it in my mouth On the plus side the Psoriasis did disappear in my scalp for a while but is now coming back Jean The list goes on and on

Posted Mon 10 Aug 2020 10.03 by SharonG

@scarletsmummy Oh Jean I am so sorry to hear this :( How awful for you!! I was considering trying it - I have a telephone consultation with my Dermatologist on Friday I fear this to be my next option and now I KNOW I will NOT be going down that road!! For the last two days I have left off all cream etc. it is dry but not itchy and NOT getting any worse - I just feel so FED up with it all :( I have had it for 22 years but never ever this bad. I am at a loss as to what to try next - I will see what he says on Friday but I am feeling that I should just keep trying to manage it without any nasty medication :( I am thinking about trying Homeopathy? Have you tried that? Thank you for your kind and honest input Xx Sharon x

Posted Mon 10 Aug 2020 19.30 by Steview
A P sufferer for over 30 years, through good and bad times.

Re Acitretin, I took it for about ten years. Yes many side effects Inc first curly hair then loss of hair, dry lips and bloody nose, headaches, blistering soles of feet plus during the time I had two ingrowing toenails removed which I put down to the drug. I also believe it contributed to mood swings. I look back on them now and think what did I put myself through. For myself in the 80's and 90's it was a matter of spending more time as an in patient or trying this drug. It was the next treatment available, it worked to an extent. There are other meds or UV treatment to explore with your Derm, if they will bypass Acitretin. Good luck.

Posted Tue 11 Aug 2020 09.19 by SharonG

@Steview Thanks for your advice too. I am NOT going to take it! Sounds grim!!

Posted Thu 13 Aug 2020 09.20 by Chris

Hi All, I took acitretin for around 17 years. My dosage fluctuated between 25mg and 50mg under the supervision of my dermatologist. I visited as an outpatient every 3 to 4 months for reviews/updates. I had blood tests on each visit and sometimes I had to fast before attending. The treatment reduced my psoriasis considerably but not completely. I also used dovabet very sparingly once or twice every 3 or so weeks. My side effects were constant dry chapped lips but it also increased my cholesterol. This is why I came off it around 18 months ago. I have had psoriasis for 24 years and tried many different creams and ointments. My advice would be to consider it as an option as different treatments are suitable for some but not for everyone.

Posted Thu 13 Aug 2020 14.11 by SharonG

@Chris Thanks - I am not ruling it out but I am dubious :( Lesser of the two evils - at the moment I am managing i although it is desperately painful - I shall discuss with Dermatologist tomorrow. Thanks again for your response. Sharon

Posted Tue 8 Sep 2020 23.48 by Itchy

You have to remember we are all different and react differently to medication. I have ended up in A&E taking some medication that works miracles for others. Acitretin didn't work for me, but does work well for others. I guess you will have to weigh up how desperate you are to try it.

Posted Mon 21 Sep 2020 14.00 by coledavis

I found this of temporary use. After a while, however, my lip started to split and no amount of lip salve would put it together, so the only solution was to stop using it. I have tried this more than once, each time with the same result.

Posted Mon 19 Oct 2020 10.52 by Matt1972

My hair went really thin on this too. Mood swings and feeling crap. It made the P less angry. More pink in colour but did not get rid of it. Did not enjoy the meds, but sometimes you may have to try this and light therapy before going onto stronger and more expensive treatment. I moved onto cyclosporin which got rid of the p 100% whilst on it. That bizarrely made me more hairy. Had the hariest legs and chest ever. Currently on methotrexate which is working ok too.

Posted Fri 5 Feb 2021 14.30 by Jamontoast7

Hi I'm new to this forum - I'm here basically because I've been on acitretin for many years - and for me its be really great. My skin is so much better. It means I can swim, wear shorts etc - without any embarrassment. However recently my blood tests have shown I may have to come off of it due to increased cholesterol. The idea off coming off it makes me very blue. I really don’t want to go back to the bad old days of terrible psoriasis. (ie Daily hospital visits, terrible staining creams & PUVA baths etc etc) It looks like I may be offered ‘apremilast’ – which I’ve not tried before – but reading things here and on other sites some of the side effects sound awful. So anyone tried apremilast? I’ve posted here because I really liked acitretin – and personally had few side effects other than dry lips and recent cholesterol hike.

Posted Fri 5 Feb 2021 17.16 by Steview
A P sufferer for over 30 years, through good and bad times.

Hi Jamontoast, I don't read many good stories about acitretin but glad it has been a success for you until your recent blood results. I fully understand your concerns not to go back to staining creams and puva as I have been there myself. Anyway I don't have experience Apremilast also known as Otezla, so cannot comment but if you search for Otezla you may get more information. Has your doc considered methotrexate? It is another systemic treatment. Hope your new treatment plan works for you.

Posted Fri 5 Feb 2021 18.19 by Jamontoast7

Hi Steview - Thanks for the reply. I've tried methotrexate - tried it for over a year, hated it, made me feel ill - and sadly had no good effect on my plaque psoriasis. Only thing that works for me are sun, fish oil, PUVA, Vit D3 and a diet thing called 'Barneys Diet/Formula'. If anything I think I will go back on the Barneys as it worked surprisingly well for me and I felt a lot healthier. I was just looking back at old before and after photos and it worked nearly as well as Acitretin (for me). Psoriasis is such a pain. Good luck with your treatments & health.

Posted Fri 5 Feb 2021 18.45 by Steview
A P sufferer for over 30 years, through good and bad times.

Thank you Jamontoast, yes P is a pai and what works for one may not for another. As well as your diet the 'otezla' may be a good move for you. Good luck

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