Newly diagnosed and about to start Acitretin

[Kentpatient]

'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

Thanks again. I think I will wean myself off the topicals as the weather seems to be getting better. I am sure the severe cold contributed to why I had this outbreak for the first time ever. I will just have to try Acitretin and see what happens. I can't stay the way I am currently. Fingers crossed for this to work

[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

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

Thanks again. I think I will wean myself off the topicals as the weather seems to be getting better. I am sure the severe cold contributed to why I had this outbreak for the first time ever. I will just have to try Acitretin and see what happens. I can't stay the way I am currently. Fingers crossed for this to work

If the topical aren't showing signs of reducing your Ps after a couple of weeks then there is a fair chance they are not right for you.
Having re read your thread I noticed there is an inference you have stopped alcohol. Is this on advice from the Dermy generally or linked to the Acitretin?

Don't forget we also have an active off topic area, there is generally somebody propping up.the bar if you just need to offload. It does help. Oh just a word of warning - there are some strange creatures lurking in the shadows but they are generally harmless

[Kentpatient]

Hello JohnB
Yes have stopped drinking. The dermatologist advised that with protopic it would make my face red and sting (which it does anyway so not sure I would have noticed the difference) but he advised not to drink with Acitretin preferably or to minimise intake. I thought I would stop for a bit and see but I could really do with a nice glass of prosecco now!
It's only day three for me but my shoulders and neckreally ache and my scalp stings...my hands and arms are a bit redder and my face is red and stinging worse.Am hoping it won't get worse and also surprised it seems quite early for side effects!

[JohnB]

Hello JohnB
Yes have stopped drinking. The dermatologist advised that with protopic it would make my face red and sting (which it does anyway so not sure I would have noticed the difference) but he advised not to drink with Acitretin preferably or to minimise intake. I thought I would stop for a bit and see but I could really do with a nice glass of prosecco now!
It's only day three for me but my shoulders and neckreally ache and my scalp stings...my hands and arms are a bit redder and my face is red and stinging worse.Am hoping it won't get worse and also surprised it seems quite early for side effects!

Ahhhhhh that makes sense. My Dermy is only ok with drinking limited amounts, but only if you are getting on a bit.

Depending upon how much Acitretin you are on, I would be surprised if you were seeing side effects so soon. I don't recall hearing others so soon, but that is not to say the ache is not from the Acitretin, aching muscles is a side effect. Stinging isn't one I've come across. This is more likely to be from the topical. Dovobet was the one tbat did it to me. Three days max and it was like slapping battery acid on. It also made it very red and angry.
I am assuming that the Dermy has explained the virtues of moisturising well? Always moisturise after bathing and a good half an hour before applying your topical, that way they have a fighting chance of getting into the skin and not just sotting on the surface. There is a large cohort on the forum that swears by virgin coconut oil. Me personally I like Cetraben applied first thing and Dermol at night.

As for the Prosecco, Im afraid drinking it on its own is just wrong. It should only ever be drunk mixed with Aperol, Soda water and plenty of ice   

JohnB

[Kentpatient]

Hello JohnB
Yes have stopped drinking. The dermatologist advised that with protopic it would make my face red and sting (which it does anyway so not sure I would have noticed the difference) but he advised not to drink with Acitretin preferably or to minimise intake. I thought I would stop for a bit and see but I could really do with a nice glass of prosecco now!
It's only day three for me but my shoulders and neckreally ache and my scalp stings...my hands and arms are a bit redder and my face is red and stinging worse.Am hoping it won't get worse and also surprised it seems quite early for side effects!

Ahhhhhh that makes sense. My Dermy is only ok with drinking limited amounts, but only if you are getting on a bit.

Depending upon how much Acitretin you are on, I would be surprised if you were seeing side effects so soon. I don't recall hearing others so soon, but that is not to say the ache is not from the Acitretin, aching muscles is a side effect. Stinging isn't one I've come across. This is more likely to be from the topical. Dovobet was the one tbat did it to me. Three days max and it was like slapping battery acid on. It also made it very red and angry.
I am assuming that the Dermy has explained the virtues of moisturising well? Always moisturise after bathing and a good half an hour before applying your topical, that way they have a fighting chance of getting into the skin and not just sotting on the surface. There is a large cohort on the forum that swears by virgin coconut oil. Me personally I like Cetraben applied first thing and Dermol at night.

As for the Prosecco, Im afraid drinking it on its own is just wrong. It should only ever be drunk mixed with Aperol, Soda water and plenty of ice   

JohnB

Thanks JohnB.
I have been sing coconut oil in the bath, it seems to work really well at keeping my skin moisurised  for a while after as well. But doesn't work well on my face: I have to use epiderm ointment on my face as its so swollen the skin is really stretched tight and everything else stings like mad. The dermatologist. Gave me doublebase but even that stings my face.
I'm thinking rather than side effects I may have a virus....took two paracetamol last night and feel slightly better this morning although I have some real peeling going on above my eyelids.

Hmmm...not a fan of Aperol spritz but a Bellini yes
Hmm

[JohnB]

Hello JohnB
Yes have stopped drinking. The dermatologist advised that with protopic it would make my face red and sting (which it does anyway so not sure I would have noticed the difference) but he advised not to drink with Acitretin preferably or to minimise intake. I thought I would stop for a bit and see but I could really do with a nice glass of prosecco now!
It's only day three for me but my shoulders and neckreally ache and my scalp stings...my hands and arms are a bit redder and my face is red and stinging worse.Am hoping it won't get worse and also surprised it seems quite early for side effects!

Ahhhhhh that makes sense. My Dermy is only ok with drinking limited amounts, but only if you are getting on a bit.

Depending upon how much Acitretin you are on, I would be surprised if you were seeing side effects so soon. I don't recall hearing others so soon, but that is not to say the ache is not from the Acitretin, aching muscles is a side effect. Stinging isn't one I've come across. This is more likely to be from the topical. Dovobet was the one tbat did it to me. Three days max and it was like slapping battery acid on. It also made it very red and angry.
I am assuming that the Dermy has explained the virtues of moisturising well? Always moisturise after bathing and a good half an hour before applying your topical, that way they have a fighting chance of getting into the skin and not just sotting on the surface. There is a large cohort on the forum that swears by virgin coconut oil. Me personally I like Cetraben applied first thing and Dermol at night.

As for the Prosecco, Im afraid drinking it on its own is just wrong. It should only ever be drunk mixed with Aperol, Soda water and plenty of ice   

JohnB

Thanks JohnB.
I have been sing coconut oil in the bath, it seems to work really well at keeping my skin moisurised  for a while after as well. But doesn't work well on my face: I have to use epiderm ointment on my face as its so swollen the skin is really stretched tight and everything else stings like mad. The dermatologist. Gave me doublebase but even that stings my face.
I'm thinking rather than side effects I may have a virus....took two paracetamol last night and feel slightly better this morning although I have some real peeling going on above my eyelids.

Hmmm...not a fan of Aperol spritz but a Bellini yes
Hmm

I could be wrong but I seem to recall Double base contains parabens (my mum used it). Parabens are known to cause skin irritation ( a touch of irony there). Try some different ones. My clinic gave me a handful of different samples so I could find one I like. One tip they gave me was to keep one in the fridge. Going on cold is really soothing.

Could your aches be stress? If not I hope you shake it off quickly if it is a virus.

JohnB

[Kentpatient]

Hello JohnB
Yes have stopped drinking. The dermatologist advised that with protopic it would make my face red and sting (which it does anyway so not sure I would have noticed the difference) but he advised not to drink with Acitretin preferably or to minimise intake. I thought I would stop for a bit and see but I could really do with a nice glass of prosecco now!
It's only day three for me but my shoulders and neckreally ache and my scalp stings...my hands and arms are a bit redder and my face is red and stinging worse.Am hoping it won't get worse and also surprised it seems quite early for side effects!

Ahhhhhh that makes sense. My Dermy is only ok with drinking limited amounts, but only if you are getting on a bit.

Depending upon how much Acitretin you are on, I would be surprised if you were seeing side effects so soon. I don't recall hearing others so soon, but that is not to say the ache is not from the Acitretin, aching muscles is a side effect. Stinging isn't one I've come across. This is more likely to be from the topical. Dovobet was the one tbat did it to me. Three days max and it was like slapping battery acid on. It also made it very red and angry.
I am assuming that the Dermy has explained the virtues of moisturising well? Always moisturise after bathing and a good half an hour before applying your topical, that way they have a fighting chance of getting into the skin and not just sotting on the surface. There is a large cohort on the forum that swears by virgin coconut oil. Me personally I like Cetraben applied first thing and Dermol at night.

As for the Prosecco, Im afraid drinking it on its own is just wrong. It should only ever be drunk mixed with Aperol, Soda water and plenty of ice   

JohnB

Thanks JohnB.
I have been sing coconut oil in the bath, it seems to work really well at keeping my skin moisurised  for a while after as well. But doesn't work well on my face: I have to use epiderm ointment on my face as its so swollen the skin is really stretched tight and everything else stings like mad. The dermatologist. Gave me doublebase but even that stings my face.
I'm thinking rather than side effects I may have a virus....took two paracetamol last night and feel slightly better this morning although I have some real peeling going on above my eyelids.

Hmmm...not a fan of Aperol spritz but a Bellini yes
Hmm

I could be wrong but I seem to recall Double base contains parabens (my mum used it). Parabens are known to cause skin irritation ( a touch of irony there). Try some different ones. My clinic gave me a handful of different samples so I could find one I like. One tip they gave me was to keep one in the fridge. Going on cold is really soothing.

Could your aches be stress? If not I hope you shake it off quickly if it is a virus.

JohnB

I'm not happy with doublebase so will stick to epaderm for now especially if doublebase contains parabens. My face has started looking slightly better today and I can see a difference when I compare a photo from a week ago and today. Not sure if it's the weather or the medication but pleased either way   And the aches are not so bad! could be stress. My GP kept asking about stress and I explained I felt fine until my face and body erupted like this and now I definitely am stressed! Have some new patches developing on my arms and legs but fairly small at the moment. 
I am trying to stay positive.
Thanks again for all the advice

[JohnB]

Hello JohnB
Yes have stopped drinking. The dermatologist advised that with protopic it would make my face red and sting (which it does anyway so not sure I would have noticed the difference) but he advised not to drink with Acitretin preferably or to minimise intake. I thought I would stop for a bit and see but I could really do with a nice glass of prosecco now!
It's only day three for me but my shoulders and neckreally ache and my scalp stings...my hands and arms are a bit redder and my face is red and stinging worse.Am hoping it won't get worse and also surprised it seems quite early for side effects!

Ahhhhhh that makes sense. My Dermy is only ok with drinking limited amounts, but only if you are getting on a bit.

Depending upon how much Acitretin you are on, I would be surprised if you were seeing side effects so soon. I don't recall hearing others so soon, but that is not to say the ache is not from the Acitretin, aching muscles is a side effect. Stinging isn't one I've come across. This is more likely to be from the topical. Dovobet was the one tbat did it to me. Three days max and it was like slapping battery acid on. It also made it very red and angry.
I am assuming that the Dermy has explained the virtues of moisturising well? Always moisturise after bathing and a good half an hour before applying your topical, that way they have a fighting chance of getting into the skin and not just sotting on the surface. There is a large cohort on the forum that swears by virgin coconut oil. Me personally I like Cetraben applied first thing and Dermol at night.

As for the Prosecco, Im afraid drinking it on its own is just wrong. It should only ever be drunk mixed with Aperol, Soda water and plenty of ice   

JohnB

Thanks JohnB.
I have been sing coconut oil in the bath, it seems to work really well at keeping my skin moisurised  for a while after as well. But doesn't work well on my face: I have to use epiderm ointment on my face as its so swollen the skin is really stretched tight and everything else stings like mad. The dermatologist. Gave me doublebase but even that stings my face.
I'm thinking rather than side effects I may have a virus....took two paracetamol last night and feel slightly better this morning although I have some real peeling going on above my eyelids.

Hmmm...not a fan of Aperol spritz but a Bellini yes
Hmm

I could be wrong but I seem to recall Double base contains parabens (my mum used it). Parabens are known to cause skin irritation ( a touch of irony there). Try some different ones. My clinic gave me a handful of different samples so I could find one I like. One tip they gave me was to keep one in the fridge. Going on cold is really soothing.

Could your aches be stress? If not I hope you shake it off quickly if it is a virus.

JohnB

I'm not happy with doublebase so will stick to epaderm for now especially if doublebase contains parabens. My face has started looking slightly better today and I can see a difference when I compare a photo from a week ago and today. Not sure if it's the weather or the medication but pleased either way   And the aches are not so bad! could be stress. My GP kept asking about stress and I explained I felt fine until my face and body erupted like this and now I definitely am stressed! Have some new patches developing on my arms and legs but fairly small at the moment. 
I am trying to stay positive.
Thanks again for all the advice

Always happy to help, it's why we are here. It's good to hear things are stalling down visually. Stress is an odd thing, it can effect you even if you don't recognise it. Stay positive and think of that holiday in the sun    .
JohnB

[Kentpatient]

Just an update on day 6 of Acitretin. Its all a bit sore and itchy and I have some new patches on my arms and legs BUT my face is calming down (not deep  just pale pibk and blotchy) and the backs of my hands have started peeling a bit and the skin underneath looks more like it used to . I am getting headaches generally in the evening and fist thing in the morning but not bad ones. My scalp is more or less the same and its' worse on my feet. So feeling positive ...if it clears on my face I feel I will cope better with the rest of it.

[jiml]

It’s good to read that you feel positive and that acetretin seems to be working for you, Im especially pleased to hear that it’s improved on your face ....( I agree it’s the worst place as you can’t hide it )
I think for results in six days is great hopefully the headaches will ease off and the clearance will continue. I have my fingers crossed that this is the one for you and you can look forward to a great summer without the Psoriasis holding you back.
I will follow your journey with great interest