Newly diagnosed and about to start Acitretin

[Kentpatient]

Hello. I have just been diagnosed with psoriasis at 50, prescribed Acitretin: pick the medicine up tomorrow as it wasn't in stock today and I am worrying about the side effects. I have psoriasis really badly on my scalp, all over my face bar my chin (it is red and blotchy and then goes deep red and blotchy and my eyelids peel constantly), both arms, less prominent on my chest and back and a dozen or so plaques on my legs. I literally woke up on 08 March with sore  red eyes and by 21 March I was covered. I am worried about the fact Acitretin can make the rash worse: I feel that if it does get worse  I won't be able to cope with it. I am using protopic on my face and diprosalyic acid on my body as well...will those topical ointments help to stop my psoriasis worsening when I start the Acitretin? 
Does anyone have any experience about whether the worse it is to start with the worse it gets? 
I am due to go on holiday for a short break on 21 May to Cyprus, booked before this happened, but am wondering if this is a good idea..the dermatologist was very laid back and said go if you want to but he also did not mention much about the medication making things worse initially. Does anyone think it might be advisable not to go?
I have already had two weeks off sick whilst waiting for a diagnosis because commuting in to London in the cold weather was unbearable and people were staring at me as my face peeled (and someone on the train asked if I had scarlet fever). I only started my job 6 months ago and am dreading taking more time off but equally am concerned about working if it makes my psoriasis even worse. Sorry to be so negative but I am really concerned and welcome any advice from others who have experienced Acitretin. Oh and really worried about hair loss...it has already got thinner with the scalp psoriasis.

Hey..... sorry I am late to all of your recent news, welcome to the club by the way - brilliant bunch of people on here, who helped me so much more than they will ever know!!

So I was diagnosed just over a year ago with pustular psoriasis - totally out of the blue too, so I can relate to you getting psoriasis later in life and the shock that this brings..... I started acitretin around August last year after much persuading - I won't lie, I was also terrified after reading all the side effects and was extremely reluctant to go onto acitretin - main reason hair loss!!  I thought I could cope with the other side effects, dry mouth, sore lips etc but the hair loss was my biggest worry by far!  So I started PUVA (light treatment) in July last year and then after a month started acitretin alongside this so my body was used to it by the time PUVA finished (which was October).  To date I have had great results and none of the side effects that are listed, which as you will appreciate was the best news I could hope for...... I know it isn't the same for all, I appreciate that totally but give it a go and if it isn't working go back to your Derm, things did get worse for me before they got better I have to say but I have persevered....

Fast track to now and I am still on 10mg of acitretin and still feeling ok, I get the occasional lower stomach pain but I can't really attribute that to acitretin if I am honest, just coincidence I think..... I haven't stopped drinking (you will see me pop up in the Psoriasis Club bar from time to time), I am having appointments every three months but so far so good!  

I went on holiday late January to Morocco and got some much needed sunshine - oh wow it did my skin the world of good - I was extra careful though and put a much higher factor sun cream on but not only did it do my skin the world of good but also my sanity!!  I think everything that had happened since I was diagnosed was getting me down and I was constantly thinking about psoriasis all the time made me so stressed out it was making everything seem much worse than it actually was...... I can relate in part to the shivering but really think that was stress not just with psoriasis but my job is pretty stressful too and think it was probably more to do with my job than the medication!

I know it is so easy to say don't worry too much about the side effects but like other people have said on here, if it isn't working for you can stop it and try something else (we are all different and different medications work for some and not others), but in the meantime go and enjoy your holiday, if not for the sunshine but just to give yourself a break - sounds like you need to catch a break and a holiday could be just the thing to help you relax a bit, like I said, it did me the world of good.

Hope this helps a tiny bit but if you need any help or support you know you are in the best place for that right here or give me a shout if you want....

Like the others have said on here go and enjoy your holiday and get some rest and relaxation, just be sensible in the sun (which is general advice anyway, not just for you)...

Have a great time and keep in touch with you acitretin journey...

Wooleyb

Thank you Wooleyb
It is good to know other people have got to a place where they can manage things and it's under control. At first my patches improved a bit but I'm on day 12 now of Acitretin and I have loads more patches and the ones that were fading are now red and angry. If this is temporary I will persevere but how do I tell? How long does the getting worse bit last before it gets Better in your experience ?
I love my job but I'm not sure I can even make it on to work now as my face has got bad again as well.

I know what you mean about thinking about psoriasis all the time it's constant worrying. I would say about 75 per cent of me is covered though now so I find it impossible not to think about it. I don't suppose that helps either. 

Any further advice gratefully received

[Caroline]

Well I don’t have experience myself with Acetretin, but to me it seems quite a heavy medication. There is quite a traject you have to go through.
But if you think this might not be the stuff for you, then you should think of going on to the next medication. In that sense I think of the fumarates, which have a bit lower (a bit... there are side effects but I think better to go through) impact, but also have a high success rate. (70%)
There are two possibilities for that Fumaderm and Skilarence, and I would advise the last one.

After that you will have to go through to the biologicals, but that may be a much later stage.

P.s. avoid MTX.

[Kentpatient]

Well I don’t have experience myself with Acetretin, but to me it seems quite a heavy medication. There is quite a traject you have to go through.
But if you think this might not be the stuff for you, then you should think of going on to the next medication. In that sense I think of the fumarates, which have a bit lower (a bit... there are side effects but I think better to go through) impact, but also have a high success rate. (70%)
There are two possibilities for that Fumaderm and Skilarence, and I would advise the last one.

After that you will have to go through to the biologicals, but that may be a much later stage.

P.s. avoid MTX.

Thank you. I just spoke to the dermatologist who mentioned starting methotrexate but he will see me on Wednesday to discuss. I will talk to him about fumarates but he seem so focused on Acitretin and methotrexate.

[Caroline]

Well I don’t have experience myself with Acetretin, but to me it seems quite a heavy medication. There is quite a traject you have to go through.
But if you think this might not be the stuff for you, then you should think of going on to the next medication. In that sense I think of the fumarates, which have a bit lower (a bit... there are side effects but I think better to go through) impact, but also have a high success rate. (70%)
There are two possibilities for that Fumaderm and Skilarence, and I would advise the last one.

After that you will have to go through to the biologicals, but that may be a much later stage.

P.s. avoid MTX.

Thank you. I just spoke to the dermatologist who mentioned starting methotrexate but he will see me on Wednesday to discuss. I will talk to him about fumarates but he seem so focused on Acitretin and methotrexate.

I don’t know the inner working of Acetretin, but I do know that MTX is a very harsh immunosuppressor.
The fumarates are moderators of the immune system, they don’t shut it down, they moderate. Fumarates are normal in the human body and essential in the energy cycle of the cells, without fumarates this cycle will stop. So that means that fumarates are in essense not damaging, which has extensively been researched. There are a lot of publications on it. (I am a fan of them, although I don’t use them anymore )

[Fred]

You will usually have to fail on two oral treatments and Methotrexate is one that most people have to fail on.

So although I agree with Caroline, you and many others may not have a choice. It's easy to fail on Methotrexate just mention the horrid side effects, tell them you want children or you like a drink. But you may have to try it before being moved onto something better.

[jiml]

Hi KP I wish you luck with the dermatologist, and hope you can have a conversation about alternative treatments, I have done Methotrexate and it worked on my psoriasis but the side effects made me have to stop it and for that reason I don't like it

You may well have to try Methotrexate and it might work for you ....it works for some of the members here who can tolerate it and it is widely used ....
I would suggest that you bring Fumaderm or Skilarence into the conversation and you might be lucky and get it, but as Caroline has said already it's not always easy at the start of treatment ...there can be side effects as your body gets used to it ....but long term it works and the side effects stop after a short time, I have had six years clear on Fumaderm and it doesn't look like failing anytime soon see [Group Specific]

Don't worry to much and take whatever they offer, but do have a chat about alternatives

[Kentpatient]

You will usually have to fail on two oral treatments and Methotrexate is one that most people have to fail on.

So although I agree with Caroline, you and many others may not have a choice. It's easy to fail on Methotrexate just mention the horrid side effects, tell them you want children or you like a drink. But you may have to try it before being moved onto something better.

Thanks Fred. He sounded as if he might be thinking of combining the two but I've googled that and it isn't well supported. I will mention liking a drink

[Kentpatient]

Hi KP I wish you luck with the dermatologist, and hope you can have a conversation about alternative treatments, I have done Methotrexate and it worked on my psoriasis but the side effects made me have to stop it and for that reason I don't like it

You may well have to try Methotrexate and it might work for you ....it works for some of the members here who can tolerate it and it is widely used ....
I would suggest that you bring Fumaderm or Skilarence into the conversation and you might be lucky and get it, but as Caroline has said already it's not always easy at the start of treatment ...there can be side effects as your body gets used to it ....but long term it works and the side effects stop after a short time, I have had six years clear on Fumaderm and it doesn't look like failing anytime soon see [Group Specific]

Don't worry to much and take whatever they offer, but do have a chat about alternatives

Thanks Jim. My face is slowly getting better but everything else has rapidly declined and the dermatologist said he would not expect that. Anyway I will see what he says on Wednesday and mention fumaderm as something I would like to consider. It's great you have found something that works!

[jiml]

The main thing is to stay positive, there is a treatment that will work for you, hopefully it will be the next one...

Yes fumaderm turned my life around and really gave me my confidence back after suffering for most of my adult life. That's why I promote it at every opportunity

[Kentpatient]

The main thing is to stay positive, there is a treatment that will work for you, hopefully it will be the next one...

Yes fumaderm turned my life around and really gave me my confidence back after suffering for most of my adult life. That's why I promote it at every opportunity  

Sounds good to me.