Reducing Acitretin Medication - Thoughts?

[Wooley]

Hi all

Some of you might know that I was diagnosed with pustular psoriasis on my hands and feet............................................well I'll give you a bit of a timeline.

April 2017 - hand and feet were awful - I was panic stricken pics below (be prepared to be alarmed!!):-





So as some of you may know I had PUVA and started on Acitretin around July 2017 and to be honest PUVA felt like it was burning my hands and feet, but I have to say but once everything calmed down I haven't had one spot on either my hands or feet and since around October 2017 my hands have been like below:-


My feet have been totally clear too.............

I have to say I am totally at a loss - and don't think for one second that i am not grateful for these results, begs the question do i have pustular psoriasis??

I am so confused - is it is a combination of PUVA and Medication (Acitretin) or was I misdiagnosed?  We are talking about October 2017 I have been clear.

As a consequence, I have decided to reduce my medication (as I think acitretin is making me feel awful) so currently I am only taking a 10mg tablet every other day and all being well I hope to reduce it further over a long period of time. 

I was luckily enough to see one of the top consultants dealing in pustular psoriasis so I was totally guided by him but to not have a flare up (not one spot) for 16 months, I am either really really really lucky or i don't know what really......

As I said i am so pleased that I haven't had a flare up but not sure where to take this now?  I do see the Consultant Derm every three months so i will ask him when I see him in March but just really confused I guess????

Thoughts on reducing medication (have reduced this over the last 4 weeks) and i guess did I only maybe have a mild version of it OR did I even have it in the first place....

So confused (but so happy at the same time with lack of spots of course)!!!

Appreciate that most of you who post don't have pustular psoriasis but interested to know your thoughts on reducing medication......

Wooley

[Caroline]

It is always worth trying to reduce your medication.
Jim recently posted about it, that he also did, but that it did not work for him. On the other hand, also Bill has reduced and for him it worked.
In the time I was using DMF, I have also gone down from 6x to 4x, after that the signs came back.
It makes sense to reduce medication, absolutely the slow workers, like acetretin is, you never know if you are dosing too high. And it seems for you that you did. Or even... do not have PP. Although the pictures typically look like psoriasis.

Certainly discuss with your Derm. I assume he/she will also see the sense of reducing. Every body is different and reacts different to medication. So even a lower dose than now may be worth trying.

[jiml]

That is strange wooley the pictures certainly looked like pustular psoriasis. And I remember well how terrible it was for you. So I'm really pleased for you that it's gone and let's hope it never comes back.
Regarding reducing the acetretin it seems a good idea to me, as you seem to be in remission ( if it was diagnosed correctly) and the only way in my opinion to see if it will come back is to slowly reduce as you are and talk with the dermatologist about totally coming off .
Was 2017 the first time you had had any psoriasis if so it seems possible that attacking it early may have pushed it into remission and it might not reappear.
But to be honest I don't know I'm just surmising and hope you stay clear

[D Foster]

I would have thought that now that it's cleared it up there must be a point where a maintenance dose would be sufficient to keep it clear, I would have a word with the derm before doing anything too drastic as you don't want it coming back ,it may not be as easy to get rid of it a second time.

[Fred]

I wouldn't reduce without speaking to your dermatologist first. He/She is better suited to advise the correct way to reduce, sometimes a reduction can bring on a flare up. Not something you want, so dermatologist first is my opinion.

Wooley can I ask why you put this in Off Topic ? I think it would get more information in Prescribed, but if you only want to share with our members then I'll leave it here.

[Grizzly Bear]

First of all Wooly, when I first saw your hand & foot, my heart sank & I could have cried for you flower

However, when I saw the cleared hand, I thought, thank christ our Wooly looks better.

Agree with Freddy, have a chat with your derm doc Wooly's, I'd hate for you to reduce your meds and it all flare up again.

BIG for you Wooly's



andy

[Wooley]

It is always worth trying to reduce your medication.
Jim recently posted about it, that he also did, but that it did not work for him. On the other hand, also Bill has reduced and for him it worked.
In the time I was using DMF, I have also gone down from 6x to 4x, after that the signs came back.
It makes sense to reduce medication, absolutely the slow workers, like acetretin is, you never know if you are dosing too high. And it seems for you that you did. Or even... do not have PP. Although the pictures typically look like psoriasis.

Certainly discuss with your Derm. I assume he/she will also see the sense of reducing. Every body is different and reacts different to medication. So even  a lower dose than now may be worth trying.

Thanks Caroline - I will speak to my derm, as you said I could be receiving too much acitretin and I do feel that it is making me feel awful to be honest.....  Originally I did get diagnosed with hand, foot and mouth disease (even though I didn't have anything on my face!!), then diagnosed Lupus, Fungal infection before my GP said he thought it was PPP - we shall see what he says in March....

[Wooley]

That is strange wooley the pictures certainly looked like pustular psoriasis. And I remember well how terrible it was for you. So I'm really pleased for you that it's gone and let's hope it never comes back.
Regarding reducing the acetretin it seems a good idea to me, as you seem to be in remission ( if it was diagnosed correctly) and the only way in my opinion to see if it will come back is to slowly reduce as you are and talk with the dermatologist about totally coming off .
Was 2017 the first time you had had any psoriasis if so it seems possible that attacking it early may have pushed it into remission and it might not reappear.
But to be honest I don't know I'm just surmising and hope you stay clear

Me too Jim, hope I stay clear - maybe acitretin is working and that's that which is absolutely brilliant don't get me wrong but I hate taking medication at the best of times so if I was able to slightly reduce the medication I would feel a bit happier - we shall see I guess.....

[Wooley]

I would have thought that now that it's cleared it up there must be a point where a maintenance dose would be sufficient to keep it clear, I would have a word with the derm before doing anything too drastic as you don't want it coming back ,it may not be as easy to get rid of it a second time.

Thanks Dave, I will speak to him when I see him in March, but no I won't do anything drastic - would hate it to come back with a vengeance!! 

[Wooley]

I wouldn't reduce without speaking to your dermatologist first. He/She is better suited to advise the correct way to reduce, sometimes a reduction can bring on a flare up. Not something you want, so dermatologist first is my opinion.

Wooley can I ask why you put this in Off Topic ? I think it would get more information in Prescribed, but if you only want to share with our members then I'll leave it here.

Ah dang I put it in the wrong place - are you able to move it?  No worries if not.....

Yes I will definitely speak to the derm - I am on such a low dose anyway 10mg and he did tell me that if I ever got a flare up to take 2 tablets a day, but touch wood I haven't had to do that yet......