Posted Sat 20 Oct 2018 18.15 by Essexgran Lifelong symptoms but with recent severe widespread flare ups
I had my dermatologist appointment yesterday. So far I have had numerous topical treatments, uv (I burned) and Methrotrexate (discontinued due to flare in IBS, acid reflux and a healed ulcer). The appointment was to put me on Cyclosporine so I had consulted people on this site and had done my homework but sadly my blood pressure was sky high and they couldn’t prescribe it. Instead, they gave me Acitretin. I hadn’t researched this drug and was so surprised /disappointed that I didn’t ask enough questions. Has anyone taken this drug with good effect and has anyone had bad side effects? I have seen that hair loss is a problem. After 50 years of covering up my body to hide my awful skin, the thought of losing my thick hair is heart -breaking and I’m now scared.
Posted Sun 21 Oct 2018 07.30 by victoria
Hi Essexgran
Did you have a leaflet with the drug ? To say what side effects there are if any? If not google manufacturer phone them and ask the question don't worry about things that might not be there bless you. Honestly I would ask if that's the case hair loss go back to g.p and say you don't want to take them be strong and positive it's you who is taking them.
Victoria
Posted Sun 21 Oct 2018 08.27 by Essexgran Lifelong symptoms but with recent severe widespread flare ups
Thank you. I intend to go to my GP about my blood pressure. My gut feeling is it was so high (191/90) due to the situation: desperation for someone to give me something to help stop the constant advance of my psoriasis , being faced with a dr who I’ve never met before rather than the usual dermatologist team , having to go back to square one describing my symptoms. I will try then to have a conversation about the acitretin with the GP but it is always helpful to hear fellow sufferers’ experiences.
Posted Sun 21 Oct 2018 09.24 by victoria
Bless you I haven't got it bad as a lot of you the bit I have is evil so I can only imagine . Not good seeing different doctors all the time having to go over your symtoms all the time, any they should read your notes god bless you try not to worry have a good Sunday
Victoria
Posted Sun 21 Oct 2018 23.18 by DjangleMemez
Hi Victoria. I have taken acitretin a few times and I have been repeatedly told this is the mildest of the drugs. Methotrexate has far strong side effects, particularly in relation to hair. I have not experience anything other than dryness. You should have regularly bloody tests to monitor liver function. And there is a official leaflet online somewhere. You’ll be fine from my experience, but obviously do your due diligence if it makes you more comfortable.
Posted Mon 22 Oct 2018 13.22 by Nanann
Hi, I have been on Acitretin for a few months now and I can honestly say that it's given me my life back. Back in June I ended up in a wheelchair due to not being able to bear weight on my feet (Ppp on hands, feet & head) within 2 weeks of starting Acitretin (25mg daily) I noticed a massive difference as the p gradually started to lessen and I could stand up without being in agony. My hands & head are now clear and my feet are almost there.
It does come with side effects that will probably be different for everyone but for me it's headache's about 3 days a week, peeling skin on lips and hair loss. The past month I'm loosing hair fairly quickly and it's at the point where I have to wear a wiglet. This has really got me down as I had fine hair anyway! And to start balding is heartbreaking but it's the price I have to pay to be able to walk & work I suppose.
Posted Mon 22 Oct 2018 15.27 by Essexgran Lifelong symptoms but with recent severe widespread flare ups
Thank you for sharing your thoughts and experiences. It’s much appreciated.
Posted Mon 22 Oct 2018 17.03 by IRIS (edited Mon 22 Oct 2018 17.04 by IRIS)
Hi everyone, I've been on M'trex for 3+ years, now also on Acitretin....the side effects I've read about are making me worry so much........can anyone tell me when I can expect to be affected....is it days/months?? Also do the side effects stay or dissapear as your body adjusts to the drug? Many thanks x
Posted Tue 23 Oct 2018 08.10 by Salty Backpack
Hi :)
I was given Actiretin nearly 2 months ago, first month on 20mg and last three weeks on 20/30mg alternate days.
Mine flared up and i have a fair amount of new patches growing along with just random dry skin...also my lips are dry which i have never had a problem with before.
I havent seen any improvement yet although the spots do appear to be forming one big spot and flattening out? maybe it takes a while to see actual results?
Posted Thu 25 Oct 2018 21.32 by angela r 4 years
I've just stopped using acitretin after being on it for 6 years. It has been my saviour until around 2 months ago. I started experiencing bone pain which was excruciating and debilitating. I couldn't even take my top off over my head. Awaiting a bone density scan to see if there is any damage and I don't know if the pain will go away now I've stopped using it. All I do know is I can't carry on using it the way things are. What I would say is if you are going on it please ensure the department prescribing it ensures you have regular bone density scans to track progress/any deterioration in bones. I'm having light treatment at the moment so skin is fairly good but once it finishes I don't know what my options will be.
What can I say, I feel for you all why this dreadful thing its awful god love you all, I must say you all seem so positive so proud of you all
Victoria always in my thoughts the bone one has upset me :(
Posted Fri 26 Oct 2018 09.28 by Essexgran Lifelong symptoms but with recent severe widespread flare ups
I feel for you. Hope the bone density scan gives you some hope for a way forward.Thank you for replying. Can I ask if you had other problems? 6 years is a long time to be on a med. At the moment, I’ve been sidetracked as it seems my blood pressure is a concern, I’ve been given tablets for that and the GP is checking my cholesterol. I have a feeling that will result in more tablets.
Posted Sat 27 Oct 2018 23.09 by angela r 4 years
Hi essexgran. My hair thinned and I had muscle cramps but on the whole it was fine. I am just a little angry at myself for not being in the know about the bone density scans and the fact they haven't sent me for any in 6 years. I should have been more on the ball.
1Posted Sun 28 Oct 2018 08.11 by Essexgran Lifelong symptoms but with recent severe widespread flare ups
Hi Angela, it’s absolutely not your fault that you were on a medication and weren’t sent for a bone scan. You have enough to deal with so don’t blame yourself. You placed your trust in highly qualified people . Save you energy to ensure the medical staff now give you good treatment.. Let us all know how you get on. Thinking of you.
Posted Sun 28 Oct 2018 13.44 by angela r 4 years
Thank you I'm too upset at the moment to think about what I will do in relation to neglect on their part. It will be three weeks tomorrow since I stopped the medication and there's no sign of the bone pain going away. We'll see what happens:)
Angela
Fingers crossed you stopped taking them in time thank the Lord no bone pain thinking of you
Victoria
Posted Mon 29 Oct 2018 12.43 by angela r 4 years
Thank you Victoria we'll see what happens x
Posted Sun 6 Jan 2019 11.33 by Ron
I started on Acitretin in November 2018 after both UVA and UVB treatments gave me only short term results. Now two months in, my Psoriasis is worst than it's ever been, significantly worst .. I have a follow up appointment with the Dermatologist at the end of this month but I'm going to ring tomorrow and try and get it sooner. In the meantime, I think I may stop taking the tablets.
Anyone else noticed a significant worsening after going on to Acitretin?
Posted Sun 6 Jan 2019 20.58 by Welshsha
I was on Acitretin early last year and had to come off due to liver count to high.
Have been prescribed Cyclosporine and i am scared to start these meds as others have been unsuccessful.
I have read that some ppl have had good results with acitretin, .
Good luck😘
Posted Mon 7 Jan 2019 11.04 by Nanann
Well after 7 months on Acitretin and good results skin wise, my dermatologist has taken me off it for 6 weeks due to the side effects. I thought I could cope with the headache's but they are sometimes turning into migraines which are a nightmare. The hair loss I thought I could handle has now resulted in me losing about 50% of my hair density, with receding and sparse patches. I have also started suffering with a burning pain in my joints now and then and my bones click more than they used to. I just feel like crap all the time.
The decision to stop Acitretin was taken last Thursday to see if side effects lessen, rather than send me for tests first and also to see how my skin reacts without meds. My left hand is already blistering so it's not looking good. I just wish there was a magic cure.
Posted Sat 20 Oct 2018 18.15 by Essexgran