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Anyone taken or taking Acitretin for Psoriasis?

Posted , 25 users are following.

sonya10
sonya10

My husband has been given Acitretin 25g capsules by his dermatologist. He's been taking them for just 4 days and has been waking up every morning with a headache which at the moment is bearable.

The worst thing is he's suffering a huge flare up of psoriasis. Dermatologist did say this could happen initially but it's so bad he's actually got psoriasis appearing in places he's not had before, like his face and neck.

My question is how long does flare up last before an improvement is seen? And is this drug worth all the issues it's causing?

My husband is very close to giving Acitretin a miss as his flare up is so bad he feels embarrassed to go to his meetings.

Anyone have any other ideas on what good for psoriasis?

3 likes, 26 replies

26 Replies

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  • larry32658
    larry32658 sonya10

    Posted

    Hi Sonya, i have had it for 10 years. I started treatment with Dovobet ointment which was good but no longer available.. After a spell with cyclosporin tabs which were amazing, I was taken off them because the monthly blood tests showed they were affecting my kidney functions. I was then put on acitretin which my derm called 'th4e last chance saloon' After about 2 years on them, and losing a bit of hair I complained because I didnt notice much difference in my skin.My derm flippantly said "well stop them then, or up the dose, take two or three, even four". I decided to up them, I began to get weird bruise looking patches on my forearms. It was breaking out in places I had not had it before and I started getting pain in my neck and eyesight problems.Some of the scales at the top of my arms will not budge with bathing, ointments or w.h.y  I have now stopped them altogether and I wiil see what happens, Vision and headaches have improved already.
    • sonya10
      sonya10 larry32658

      Posted

      Thank you Larry

      my husband decided not to try them as once he heard hair loss he said no way.

      his dermatologist recommends intensive lamp treatment but as he works abroad a lot he won't have time to commit to it so it's not going to be beneficial.

      he's still plodding along using ointments and having the usual flare ups.

      i think he's waiting for a miriacle cream but I tell him he'll be waiting along time.

  • joe61929
    joe61929 sonya10

    Posted

    Hi Sonya this is my story in 5 mins:

    I've had psoriasis for 20 years which is currently at about 40% coverage and it affects my finger nails and toe nails. More recently I've been diagnosed with psoriatic arthiritis that affects my hands, feet, neck and lower back.

    About 12 years ago I was prescribed acitretin and I found it made my psoriasis / general skin condition worse than before starting treatment. At that time I moved onto methotrexate which for me didn't come with any ill side effects but it simply didn't have any positive effect on my condition. I was then prescribed cyclosporin which really did work for my P and I stayed on cyclosporin for about 10 months until my derm recommended I take a break.

    Recently in the last 6 months after being diagnosed with PA in Feb '14, my rheumatologist recommended we try methotrexate again but this time for PA treatment rather than P. I wasn't keen due to my earlier fail many years ago but agreed to give it a 2nd chance. Funnily enough after a gradual dose crank to 20mg per week, my P was really starting to respond well, but the PA not so much. My fortnightly blood tests then started to show that my liver function was starting to go bad and I've had to stop methotrexate completely.

    The next upcoming thing for me is Leflunomide and we'll see how that goes.

    I believe that the choices we make for P and PA treatment are a very personal thing. I know that some people with psoriasis / psoriatic arthiritis don't want to undergo systemic / biological treatment for fear of the side effects of these drugs. For me it's the opposite - if I'm able to find a treatment that I feel improves my condition and quality of life whilst I undergo careful medical monitoring then I'm all for the treatment. It sounds like your husband is leaning towards finding some treatment that really works for him rather than holding back.

    I've had P long enough to be 100% certain that my condition is directly related to a problem with my immune system and although various creams, oitments and lotions have helped me over the years, I know that these are just treating the external symptoms of my condition and are not really treating the internal cause.

    I wish you and your husband all the best

    Joe

  • Ddream
    Ddream sonya10

    Posted

    Hi I've tried everything too until I was prescribed Acitretin. Initially on 10mg a day it took 4 months before it really kicked in. At that point we upped to 20mg a day. Another 2 months later I am as near as damit clear. This drug does work you need to give it time. I've suffered with this for 30 years and finally have a solution. Side effects are rare but obviously everyone's experience is different. I wouldn't dismiss it out of hand because of scare stories. You need regular blood tests, mine are every 14 days and all is well with me. I might add that I have liver cancer and initially had my skin clear through chemotherapy which showed me that drug treatment does work. Not suggesting that route but you either put up with it or try something that might be challenging at first but ultimately pay off. I can't begin to say what a difference to my life this has made.

    My best wishes to you both

  • steve14468
    steve14468 sonya10

    Edited

    Hi Sonya

    ​Please tell ya ol man NOT to give up on it !!  I have been on it for about 6 years  i am clear as a bell now . It doesnt work fast !!   It needs to get in your system . It could take about 3-4 mths until you see the full benifits . I too had headaches in the beginning  however they should go  shortly . Im on 25 ml a day also . I had chronic psoriasis - i mean EVERY WHERE !!   YES EVERYWHERE !! 

    ​Im in Australia  and im a bloke also !!   Tell him it will be ok

    • madpaddy
      madpaddy steve14468

      Edited

      Steve thanks for this. I've started taking it just over a week ago. Not much change as i expected however my P is no longer sore when i hop into bed. It still have it but i doesnt feel like i have it if you know what i mean. I do find i need to drink alot more water and I try and do excesis every day. They way i see it is that i have to be a bit more mindfull of my health to counteract the side effcts. Any way i only signed up to say thanks for your post. Good to know people are going well on it. 

      All the best. 

      Shane 

    • Lizpercy
      Lizpercy steve14468

      Posted

      How Long does the headaches go on for Steve 14468 I started acitretin last wednesday just wondering if its the tablets or my cough that giving me the heasdaches
    • Mike.H
      Mike.H Lizpercy

      Posted

      I started taking acitretin 7th January this year. I had bad headaches from day 4 to day 9, and none since. Hopefully yours have gone now. 
    • Lizpercy
      Lizpercy Mike.H

      Posted

      Headaches all gone and massive improvement to my skin
  • Chris14166
    Chris14166 sonya10

    Posted

    Hi

    Just (literally 10 minutes ago) taken my first 30mg of acitretin so hoping for the best. Read more stuff on the Internet than I should have done prior to starting my meds and got myself worried about it. Silly really because I have said on numerous occasions I would do anything for my skin to look normal, done it now so will wait and see what happens.

    Suffered from P for over 20 years, tried all manner of lotions, potions and creams, miracle cures from the Internet (which weren't), done the UVB light treatment 3 times, first 2 times good results last time not so good, P started to come back before i had even finished the treatment. On the waiting list for PUVA now as well, but that a bit of a wait due to numbers of patients and lack of machines (only 1 in my hospital), anyone done PUVA? How was it? Be good to hear other's experiences

    • madpaddy
      madpaddy Chris14166

      Posted

      Well Chris. How's life? Well I've just started week 3. My flakes are bigger...you know the ones that are all over my carpet. But my p is definitely less pain full. Still have everything but forget I have it. I work shifts and normally after nights it's burning but not this time. lips are getting a tad bit dryer but it is coming into winter down here. Last night was the first night I've been on the drink since taking them. And felt a bit worse than normal today. Advice I could give is increase your water intake. I've noticed the difference. All the best and keep me posted
    • rachy796
      rachy796 Chris14166

      Posted

      I've had PUVA twice, and UVB, it worked for short time but came back again. On methotrexate still have bad skin and pain, recently had X-rays waiting for appointment with Rheumatologist. Start physiotherapy Friday to learn exercises to ease my joint pain

  • Chris14166
    Chris14166 sonya10

    Posted

    Hi all

    Week 1 on Acitretin (30mg per day) complete, feel ok, nothing particularly unpleasant happening yet. Slight dryness on lips and tired but other than that all good.

  • debbie67175
    debbie67175 sonya10

    Edited

    Hi all I found this discussion when I wa researching acitretin when I was prescribed it 4 weeks ago. I just wanted to let you all know my progress.

    I'm on 30ml a day starting off. I've had 3 rounds of light treatment in the past, first 2 worked well but the last one due to stressful life just didn't work.

    I have p on over 70% of my body infact the only place I didn't suffer luckily was my face. One of the side effects for of this drug is hair loss but I already suffer with that due to p anyway so I had nothing to loose really lol.

    The first week my p flaired up it was painful and red. The backs of my hands looks awful and I suffered going to work but I stuck at them.

    Week 2 the rednes went and it looked how it did when I first started the treatment. My lips were really dry but that's the only side effect I noticed.

    Week 3 I had a week off work and that week I noticed a marked improvement. Scales were gone, my skin had patches but was smooth and my nails started to look more healthy. The hair loss I have noticed hasn't been a problem. Infact less hair comes out now whilst shampooing than did before treatment.

    I'm now at the end of week 4 and yesterday was the first day I wore short sleeves in public for years. P is still there but not so noticeable I already feel so much more confident and I'm hoping the next 4 weeks I'll continue to see improvement.

    My advice would be to keep trying we all know it won't clear up overnight but also it doesn't work with everyone. I hope this helps with anyone else starting treatment I haven't found a lot of information about other peoples journeys with treatments smile

    • Ddream
      Ddream debbie67175

      Posted

      Debbie

      My P was so bad they used to take pictures of me for reference when I went to hospital!

      Like you I'm now taking 30mg of acitretin a day for about 12mths now. It does take time to work but I'm now pretty clear now. You have to think how long it took for your skin to get so bad and now you're going the other way, you can't expect it to go overnight. I'd say if it's getting a little better each day it's a result.

      Best of luck and positive thoughts

      DD

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