Not sure Acitretin is for me...

[OneBigItch]

Hi, I've been taking Acitretin for about 7 weeks now and all I can say about it so far is that I seem to have had a lot of the side effects without any of the benefits.

I have had Psoriasis for about 20 years and over the last 5 or so it's got gradually worse. I've had a few light treatments that have worked but it always came back. My consultant advised Acitretin so I thought I'd give it a go.

I've read that it's slow but I've been on it for 7 weeks now and instead of seeing improvements, all I've seen is a dramatic worsening! It now almost completely covers my buttocks and legs and is slowly making its way up my stomach, back and arms.

I can cope with some of the side effects - dry lips and nostrils with the accompanying nose bleeds, but some of the others are getting to me. I'm almost constantly cold (yet when I'm sat my psoriasis is hot and sweaty), my skin feels very smooth and almost waxy or like it has a thin film of plastic on it - including the roof of my mouth and yet my plaques are now paper thin and get cut at the slightest scratch. But like I said the worst has to be the huge flare that just seems to be getting worse. There are new patches appearing on a daily basis and they all seem to want to join up and have a party!

Is this normal for Acitretin? I am meeting my derm on Tuesday and I don't know what to say. Do I stick with it for another 8 weeks or do I ask for something else?

I hope some of you kind folks can give me some advice.

Thanks.

[Fred]

Sorry I have never used it myself, others have said it can take time to get going but I noticed on Micky's thread here: Acitretin

It says "Most patients will see a gradual improvement of their skin, starting about 2 weeks after treatment commences and continuing for up to 12 weeks"

Hopefully someone else will have more information.

Welcome to Psoriasis Club by the way.  

[jiml]

Hi and    to the forum you have found a great place for information on the disease and a lot of sufferers like yourself struggling to find the right treatment,
We are all happy to share experiences here in the safety of this forum and you will find its just sufferers you and me .....you will not meet anyone with ulterior motives or trying to sell you something .
So look at the various threads from people on acetretin and many of them will tell you that the plaques got worse before they got better.
I don't know what dose you are on but it might just need the dose tweaking to get it going

If it doesn't get improve soon I would arm yourself with alternatives you can talk over with your dermatologist next week

If you need any advice on alternatives to acetretin just shout and we will point you towards the relevant threads to read

I myself am on Fumaderm which is very effective .... But it's early to be advising on changing as Acetretin might work for you shortly before the plaque party really gets going  

Thanks for finding us by the way, there are usually a few of us around lurking in the off topic section .....I may see you there
Jim

[OneBigItch]

Thanks Fred and Jim, I look forward to getting to know you all. I know 7 weeks is nothing in the grand scheme of things but I was hoping for at least something to happen rather than a laundry list of side effects and a huge flare.

Hopefully the derm will be able to advise what I should do on Tuesday. I suppose I should be a little more patient.

[jiml]

Thanks Fred and Jim, I look forward to getting to know you all. I know 7 weeks is nothing in the grand scheme of things but I was hoping for at least something to happen rather than a laundry list of side effects and a huge flare.

Hopefully the derm will be able to advise what I should do on Tuesday. I suppose I should be a little more patient.

Yes he should be able to advise but meantime have something in mind in case he says stop the acetretin, read here what others say about the various treatments. He might suggest methotrexate

See this link,Methotrexate


What dose of acetretin are you on, do you know?  See Acitretin

Or there are biological drugs See Biological Treatments For Psoriasis


Or there's Fumaderm Fumaderm

[Fred]

Thanks Fred and Jim, I look forward to getting to know you all. I know 7 weeks is nothing in the grand scheme of things but I was hoping for at least something to happen rather than a laundry list of side effects and a huge flare.

Hopefully the derm will be able to advise what I should do on Tuesday. I suppose I should be a little more patient.

If it helps, I would say stick with it for now. Once you fail or can't tolerate it they will move you on to something else. Personally I wouldn't go for Methotrexate as an alternative, but it may be worth asking about Fumaderm or one of the Bio treatments whilst you are at your appointment.

Fumaderm

Biological Treatments For Psoriasis

[OneBigItch]

I'm currently on 25mg a day. I've heard absolute horror stories about mx that have put me off it, are the stories justified?

If I start clearing then ill be more than happy to stay on these but if not would I get a shot at fumaderm? People seem to rate that quite highly.

[jiml]

I'm currently on 25mg a day. I've heard absolute horror stories about mx that have put me off it, are the stories justified?

If I start clearing then ill be more than happy to stay on these but if not would I get a shot at fumaderm? People seem to rate that quite highly.

There's a possibility they may increase to 35mg which might kick it into action although with  the side effects you mention I believe it means it's beginning to work

Methotrexate is a good drug, but many on here including me don't like it although when I took it, it did clear my skin ...but the side effects were terrible for me....but some on here take it without any problem

Fumaderm is the tablets I am on and I rate them very highly, it has kept me clear for over 4 years and I would recommend them to anyone... Do talk to your dermatologist about the options but be ready to argue for what you want if he tries to push you towards anything you don't want

[Fred]

I'm currently on 25mg a day. I've heard absolute horror stories about mx that have put me off it, are the stories justified?

If I start clearing then ill be more than happy to stay on these but if not would I get a shot at fumaderm? People seem to rate that quite highly.

My personal opinion is that Methotrexate is poison and should not be dished out like it is. It's used for abortions and to help fight cancer and good at it too, but we have psoriasis and there are much kinder treatments for our bodies.

As for Fumaderm. It's not available in all parts of the UK so don't build up your hopes to much just in case you're in one of those areas, but it wouldn't hurt to ask as it does give good results.

[D Foster]

Hi OBI , If there is one thing that is true with all the treatments everyone is different and what works for one does not necessarily work for another.
I have had P for over 40 years and PsA started a few years after and in all that time I have had a myriad of treatments including Acitretin which apart from causing me ingrowing problems with my finger and toe nails did nothing for me. Cyclosporine was horrific and I could have cheerfully shot myself on that but I was on MTX for nine years plus , six by tablets at 25mg and three years plus by self injection at 20mg. It worked really well for me though I never got 100% clearance but what happened was an increase in the side effects over time hence the change to injections which was OK but the side effects built up yet again. I am now on Stelara and this has given me 99% clearance with minimum side effects but what I am saying is, don't reject treatments on what has happened to someone else as we are all different and it may be OK for you.

Dave