I have had psoriasis for 17 years and have been treated with PUVA, exorex, alphosyl, dovonex, dovobet etc. This year I have had a massive flare up (2 months duration) affecting all my body (except face).
Acitretin was commenced 11 days ago. I have turned purple and am flaking extensively, requiring emollients every 3-4 hours. I feel raging hot on the outside and freezing cold on the inside. Despite pain and discomfort I am also feeling incredibly drowsy.
Has anyone else had this experience?
I understand that treatment can initially make things worse (hence I am persevering) but when can things be expected to get better? Is going to be a question of days, weeks or months?
Also, has anyone else had diarrhoea (or markedly increased frequency of going to the loo)?
Thank you.
Posted Thu 4 Aug 2016 10.42 by Ballymoney
I am 69 and developed a rare severe and serious form of psoriasis called pustular psoriasis 3 years ago. Took months to diagnose so end up in derm ward in hospital for three weeks. Was covered in betnovate and paraffin 4 times a day. Was advised I had no choice but to take Acitretin 35mg daily.. Had no form of sickness. My finger and toe nails came off and my hair fell out. After 9 months liver function went sky high so had to come off it. Now on 2 immunosuppressant injections daily plus 15mg Acitretin but still not controlled. Apparently Acitretin is the safest. The pustular form is horrendous. Haven't been out for 3 years due and prior to that had been out every weekend. Hope Acitretin works for you.
Posted Sun 7 Aug 2016 21.01 by charlie I have had psoriasis for 50 years
Hi SusieQ, I've been on acitretin for over 10 years. Having tried everything, I have found that acitretin is the best thing in terms of keeping my psoriasis at bay. I had a pretty bad flare up 6 months ago and I'm now on Humira injections as well as 20mg of acitretin. You don't mention what dosage you're on but you should be staring on a low dose and building it up gradually. I'm 6'2' and find that 30mg per day is as far as I can tolerate acitretin. I hope this helps, Charlie
Posted Mon 8 Aug 2016 12.29 by SusieQ
Thank you Charlie. It is encouraging to hear that acitretin has been successful. Yes, I was started on a small dose - 20 mg daily. I am now on day 17 of treatment. I am pleased to report that my skin is now dark pink (rather than purple) and the terrible heat has diminished. The plaques have disappeared and my skin is smooth now (with the help of regular emollients). I am due to be reviewed by the dermatologist in 4 days time (with blood tests 2 days beforehand). However, my hair is starting to fall out in clumps and I have developed significant ankle swelling.
Thank you Ballymoney for your feedback, and I am sorry that you have had bad side effects from the acitretin and that the psoriasis has had such a major impact on your life. What injections do you take? At what point do you have to come off acitretin due to high liver tests?
Posted Tue 9 Aug 2016 08.55 by Ballymoney
I was on Acitretin starting at 35mg and after 3 months my hair was very sparse. Liver tests done every month after I came out of hospital. Slightly elevated and blood tests every two months. Suddenly liver function went up to 450 at nine months. Dropped to 20mg and use dovonex twice daily. Even tried 2.5 methotrexate with the Acitretin but no fifference. So bad in April 2015 my dermatologist applied for funding for Anakinra injections. They are for rheumatoid arthritis but sometimes work on pustular psoriasis. Think about £10k per annum. From today I have 2 and 1 on alternate days plus 10mg Acitretin. My feet lower legs and neck burn all the time but that's the disease not the medication. From face to knees I use Cetreben twice and lower legs and feet three or four times daily. Eleanor Ballymoney
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