Acitretin Anxiety

[Ever-hopeful]

Hi Millero86,
My psoriasis story is similar to yours in its presentation but now in my late 40's it's worse than ever. I've just started the Acitretin regime and had similar anxieties. I've had very dry, red skin and peeling lips but not too much else. Unfortunately my feet started to peel and crack badly so my dermatologist has reduced the Acitretin to 10mg every other day until my review on 7th Dec. I'm desperate to see some results but thinking it'll be years on this dose!! I'm really keen to see how you get on as it'll give me the motivation to stick with it. Keep us posted!

[Caroline]

Hi Millero86,
My psoriasis story is similar to yours in its presentation but now in my late 40's it's worse than ever. I've just started the Acitretin regime and had similar anxieties. I've had very dry, red skin and peeling lips but not too much else. Unfortunately my feet started to peel and crack badly so my dermatologist has reduced the Acitretin to 10mg every other day until my review on 7th Dec. I'm desperate to see some results but thinking it'll be years on this dose!! I'm really keen to see how you get on as it'll give me the motivation to stick with it. Keep us posted!

Too early to tell yet if it is going to work. Do discuss with your dermatologist if this dose is going to do it, he/she must have records and statistics of that. Otherwise discuss with him/her the alternatives that are available.

[Ever-hopeful]

To be honest it's a little frustrating as I'm sure the plan is to increase it but because my feet started to peel my derm said she'd reduce it to give my feet 'a break' as in her experience, patients stop taking the medication if the side effects are troublesome. I feel like I'd rather increase the dose, deal with the side effects and see some improvement. At the moment I feel like I'm only seeing side effects.

My nails are starting to pit a little which I never noticed before so don't know if this is an Acitretin side effect too? The flaking is unbelievable but the patches, although extensive seem a bit smoother, but REALLY red and angry looking. I feel like if I see a hint of an improvement I'm more inclined to stick with it! I feel like I'm constantly moaning about my skin!! 

[Caroline]

Of course you are moaning about your skin. But don't worry, this is the place to do that.
We know why you do that because we (almost) all have been there and recognise it, so it will not annoy us .

Some of us may recognise where you are going through and may react because of that recognition. Anyway, the acetretin is doing something, that is for sure..

[Fred]

I feel like I'm constantly moaning about my skin!! 

I can't help with Acitretin, but don't you worry about moaning about your skin on here. We all do it or have done in the past, and probably will do again. That is why we are here, so don't hesitate to have a good old grumble if it helps.

[jiml]

Hi the nail pitting is part of psoriasis and I don't think related to Acetretins, but I could be wrong

Have you considered phoning the hospital and speaking to the dermatologists secretary tell them of your concerns ask if the dermatologist can phone you back ....explain you are unhappy with the reduced dose and would rather suffer the side effects than be going backwards as you seem to be at the moment

It pays to let them know, or they will assume you are happy ....a phone call will put them straight

Never worry about moaning about your skin as others have said we all do it or have in the past.

[Fred]

Hi the nail pitting is part of psoriasis and I don't think related to Acetretins, but I could be wrong

Yes nail pitting is common in all psoriasis patients and usually worse with psoriatic arthritis along with splitting and lifting from the bed.

[Kersty]

Oy...Acitretin anxiety.  How 'bout plan old "every stinkin' psoriasis medication" anxiety?  I worked for 10 years at a place that had the most amazing drug benefit plan.  I got to try (at last count) some 30+ different topical combinations for the psoriasis on my hands and feet.  The psoriasis was so bad at times that I couldn't walk without "swaddling" my feet in bandages and gauze, and then two pair of socks, and then a size shoe two times bigger than what I normally wore.  All so I could walk.  

I can relate to the anxiety of taking a new drug.  Somehow, every single new topical would give me hope, and believe me, I tried them all for anywhere from 30 days to up to 6 months, with most of them only giving a bit of mild relief.  I did not want to take any kind of biologic drug for fear of what the long term effects might be.  But after nine years of painful hands and feet, with my hands always bleeding and having to wear gloves to hide the cuts, my dermatologist prescribed Acitretin.  I have to admit that it did significantly lessen the psoriasis and fairly quickly, at that.  However, I was one of those rare individuals that experienced almost immediate loss of hair, and after six months of it literally falling out, I decided to stop the Acitretin and try Apremilast.  

I have now been on the Apremilast for over six months, and I think I am going to have to call it quits as well.  The peeling, itching, and pain of my feet continues, and some nights I wake up bleeding because I have scratched at them so badly.  I keep my nails cut as short as possible, and even wear gloves to bed to deter the scratching, but I can't remember EVER scratching/itching/clawing at my feet like this before this drug.

I am now considering Stelara, and once again, am back to feeling anxious about whether to go on with yet another biologic (and expensive) drug.  If I didn't want to walk so badly, I might just give up, but I kinda like getting around in this world.

Oh, and my hair loss totally reversed itself, and my hair that I lost has definitely started growing back in!

May we all live to see the day that our symptoms are not just tolerable, but ABSENT!!!

[jiml]

Oy...Acitretin anxiety.  How 'bout plan old "every stinkin' psoriasis medication" anxiety?  I worked for 10 years at a place that had the most amazing drug benefit plan.  I got to try (at last count) some 30+ different topical combinations for the psoriasis on my hands and feet.  The psoriasis was so bad at times that I couldn't walk without "swaddling" my feet in bandages and gauze, and then two pair of socks, and then a size shoe two times bigger than what I normally wore.  All so I could walk.  

I can relate to the anxiety of taking a new drug.  Somehow, every single new topical would give me hope, and believe me, I tried them all for anywhere from 30 days to up to 6 months, with most of them only giving a bit of mild relief.  I did not want to take any kind of biologic drug for fear of what the long term effects might be.  But after nine years of painful hands and feet, with my hands always bleeding and having to wear gloves to hide the cuts, my dermatologist prescribed Acitretin.  I have to admit that it did significantly lessen the psoriasis and fairly quickly, at that.  However, I was one of those rare individuals that experienced almost immediate loss of hair, and after six months of it literally falling out, I decided to stop the Acitretin and try Apremilast.  

I have now been on the Apremilast for over six months, and I think I am going to have to call it quits as well.  The peeling, itching, and pain of my feet continues, and some nights I wake up bleeding because I have scratched at them so badly.  I keep my nails cut as short as possible, and even wear gloves to bed to deter the scratching, but I can't remember EVER scratching/itching/clawing at my feet like this before this drug.

I am now considering Stelara, and once again, am back to feeling anxious about whether to go on with yet another biologic (and expensive) drug.  If I didn't want to walk so badly, I might just give up, but I kinda like getting around in this world.

Oh, and my hair loss totally reversed itself, and my hair that I lost has definitely started growing back in!

May we all live to see the day that our symptoms are not just tolerable, but ABSENT!!!

Yes Kersty you have summed it up well telling of your history of topicals, acetretin and now Apremilast. Which is causing you bad itching as well as the psoriasis
I think maybe it is time to switch to the next step like stelara ...

I hope you get some relief soon and it's long lasting .... I think as time goes on that they are getting closer and closer not to a cure, but an effective long term control.

[Ever-hopeful]

Of course you are moaning about your skin. But don't worry, this is the place to do that.
We know why you do that because we (almost) all have been there and recognise it, so it will not annoy us .

Some of us may recognise where you are going through and may react because of that recognition. Anyway, the acetretin is doing something, that is for sure..

Thanks Caroline, yes, that's certainly another way of looking at, probably a bit more positive too