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.

[jiml]

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.

Hi and try not to worry ....there is every chance you will get a good result with the acetretin several members use it and have done well on it
See johnb's journal for his experience plus I'm sure he will tell you himself how it works for him [Group Specific]

Kelly did a thread about her experience here Acitrecin - Week 4 onwards

Kat's Journal from here [Group Specific]

I haven't been on acetretin but do follow the posts and it seems a good drug ...so my advice is not to stress about taking it ...as that won't help ..give it a good try.
There is no quick fix, whatever you get can take a while to get into your system and start to work....I wish I could say it will work overnight, but that is unlikely.....but we are all different and react differently to drugs...I hope it will work speedily for you and give you clearance

I will follow your thread with great interest
Jim

[Fred]

I see Jim has pointed you to some good threads above that will help. You may also want to read Acitretin

As for your break in Cyprus: Yes definitely go, there is no reason why you shouldn't. Starting a new treatment when enjoying a holiday is a bonus as you will be relaxing.

Read up on the threads mentioned, but enjoy your holiday.

Don't forget to send us a postcard, and bring back a stick of rock for everyone.

[Kentpatient]

Thank you both. I took the first tablet tonight and will try and put side effects out of my mind and keep busy and hopeful. I looked at the other threads and saw some people hardly had any side effects and are making good progress and others have moved on to something that suits them better.

[Fred]

Thank you both. I took the first tablet tonight and will try and put side effects out of my mind and keep busy and hopeful. I looked at the other threads and saw some people hardly had any side effects and are making good progress and others have moved on to something that suits them better.

The good thing about the side effects of all the psoriasis treatments is that they can usually be reversed once the treatment is stopped. And as long as you are being monitored properly (which you should be) they should detect any problems way before they cause any ongoing problems. It is rare to get ongoing problems from any of the psoriasis treatments, and I don't recall any of our members ever reporting ongoing problems.

So keep an eye on things yes and do report anything you are not happy with, but any good dermatologist will and should spot any problems.

I think we could all tell you we have had side effects at one time or another, but I doubt many could tell you they have had long term problems to their health.

Do keep updating this thread as it will give you something to look back on in the future.

[jiml]

Thank you both. I took the first tablet tonight and will try and put side effects out of my mind and keep busy and hopeful. I looked at the other threads and saw some people hardly had any side effects and are making good progress and others have moved on to something that suits them better.

Good luck, and a wise decision putting the side effects at the back of your mind. We are all different and react differently, yes the three examples all had different experiences , hopefully your experience will be positive

If you want to find more users experiences you can put acetretin in the search facility Search

[JohnB]

Hi Kent patient and welcome to our club  .
I'm in work at the moment but will fill you in on what to expect from Acitretin later on today. Above all don't worry and yes definitely go on your holiday.

JohnB

[JohnB]

Right now then, where do I start??
Acitretin. I could tell you it is all sweetness and light but here you will only get honest feedback from people that have been there.
Yes there are an awful lot of side effects to Acitretin but as with all medication everybody is different. How it will effect you is anybody's guess. All I can do is tell you my experience.

I started off on 25mg for about 12 weeks, but because the clearance was slow they upped it to 30mg. Eventually I had to stop as I was suffering from headaches and my description of them have them cause to stop the medication and send me for a head CT. Fortunately all the tests came back clear (although Mrs John was surprised they actually found a brain). So after several months with nothing and my Ps returning it was decided that I should give Acitretin a second chance and was restarted on 10mg, but it had no effect. So it was increased to 25mg and that is where I am now. As for side effects, on both occasions dry lips started at around the 3 week mark. Another couple of weeks my hands started peeling, the following week my feet feeling left out decided to join the party. I have to be honest and the hands and feet don't look pretty, but I am more than happy to put up with the side effects at the moment. Although the Ps is still obvious it doesn't itch and I don't have to vaccuum my bedroom ever day.
I would strongly suggest you give it a go and here is the but it can be a very slow burner. I was way beyond 12 weeks before I saw any real reduction in redness thickness and scaling. I have heard of people getting sure stantial clearance in a couple of weeks. It just goes to back up the everybody is different mantra.

As for your holiday I would implore you to go. The sunshine on bare skin will help a lot. I would be careful of what sunscreen to use. Only use a factor 30 and check on a small patch that it doesn't irritate you.

I'm more than happy to offer more help if you need it, but I may not be able to reply promptly.

I  really do hope you find a friend in Acitretin, it is one of the lesser of several evils.

Enjoy your holiday and don't forget our stick of rock
JohnB

[Kentpatient]

Right now then, where do I start??
Acitretin. I could tell you it is all sweetness and light but here you will only get honest feedback from people that have been there.
Yes there are an awful lot of side effects to Acitretin but as with all medication everybody is different. How it will effect you is anybody's guess. All I can do is tell you my experience.

I started off on 25mg for about 12 weeks, but because the clearance was slow they upped it to 30mg. Eventually I had to stop as I was suffering from headaches and my description of them have them cause to stop the medication and send me for a head CT. Fortunately all the tests came back clear (although Mrs John was surprised they actually found a brain). So after several months with nothing and my Ps returning it was decided that I should give Acitretin a second chance and was restarted on 10mg, but it had no effect. So it was increased to 25mg and that is where I am now. As for side effects, on both occasions dry lips started at around the 3 week mark. Another couple of weeks my hands started peeling, the following week my feet feeling left out decided to join the party. I have to be honest and the hands and feet don't look pretty, but I am more than happy to put up with the side effects at the moment. Although the Ps is still obvious it doesn't itch and I don't have to vaccuum my bedroom ever day.
I would strongly suggest you give it a go and here is the but it can be a very slow burner. I was way beyond 12 weeks before I saw any real reduction in redness thickness and scaling. I have heard of people getting sure stantial clearance in a couple of weeks. It just goes to back up the everybody is different mantra.

As for your holiday I would implore you to go. The sunshine on bare skin will help a lot. I would be careful of what sunscreen to use. Only use a factor 30 and check on a small patch that it doesn't irritate you.

I'm more than happy to offer more help if you need it, but I may not be able to reply promptly.

I  really do hope you find a friend in Acitretin, it is one of the lesser of several evils.

Enjoy your holiday and don't forget our stick of rock
JohnB

Thank you JohnB
It's helpful to hear your experience especially as you've done it twice. I am giving it a go I only hope things don't get worse as they are pretty bad now especially my face. I will go away, especially as my best friend has pledged not to drink either while we are away and your advice about sunscreen is noted. 
Can I ask if you also used topical treatments at the same time? My dermatologist said to keep using protopic and diprosalic steroid ointment. But they don't help much anyway so I wondered if it makes a difference to to how the Acitretin works?

 Yes stick of rock on my list...if I can fit it in alongside all the lotions and potions I seem to have to travel with now. 
Thanks again.

[JohnB]

Right now then, where do I start??
Acitretin. I could tell you it is all sweetness and light but here you will only get honest feedback from people that have been there.
Yes there are an awful lot of side effects to Acitretin but as with all medication everybody is different. How it will effect you is anybody's guess. All I can do is tell you my experience.

I started off on 25mg for about 12 weeks, but because the clearance was slow they upped it to 30mg. Eventually I had to stop as I was suffering from headaches and my description of them have them cause to stop the medication and send me for a head CT. Fortunately all the tests came back clear (although Mrs John was surprised they actually found a brain). So after several months with nothing and my Ps returning it was decided that I should give Acitretin a second chance and was restarted on 10mg, but it had no effect. So it was increased to 25mg and that is where I am now. As for side effects, on both occasions dry lips started at around the 3 week mark. Another couple of weeks my hands started peeling, the following week my feet feeling left out decided to join the party. I have to be honest and the hands and feet don't look pretty, but I am more than happy to put up with the side effects at the moment. Although the Ps is still obvious it doesn't itch and I don't have to vaccuum my bedroom ever day.
I would strongly suggest you give it a go and here is the but it can be a very slow burner. I was way beyond 12 weeks before I saw any real reduction in redness thickness and scaling. I have heard of people getting sure stantial clearance in a couple of weeks. It just goes to back up the everybody is different mantra.

As for your holiday I would implore you to go. The sunshine on bare skin will help a lot. I would be careful of what sunscreen to use. Only use a factor 30 and check on a small patch that it doesn't irritate you.

I'm more than happy to offer more help if you need it, but I may not be able to reply promptly.

I  really do hope you find a friend in Acitretin, it is one of the lesser of several evils.

Enjoy your holiday and don't forget our stick of rock
JohnB

Thank you JohnB
It's helpful to hear your experience especially as you've done it twice. I am giving it a go I only hope things don't get worse as they are pretty bad now especially my face. I will go away, especially as my best friend has pledged not to drink either while we are away and your advice about sunscreen is noted. 
Can I ask if you also used topical treatments at the same time? My dermatologist said to keep using protopic and diprosalic steroid ointment. But they don't help much anyway so I wondered if it makes a difference to to how the Acitretin works?

 Yes stick of rock on my list...if I can fit it in alongside all the lotions and potions I seem to have to travel with now. 
Thanks again.

Anytime. 

I wish I could tell you it won't get worse, but I can't lie to you. There is a chance it may, but give the Acitretin a chance.
As for topical I have never had any success with any apart from a coal tar based good that isn't available anymore. Just remember the steroid based ones shouldn't be used for an extended period of time. The sun is more likely to be of more benefit, it always helps clear mine.

JohnB