Been a while...

[HenryB]

Hi,

Sorry for being out of touch there for a while. Had a lot going on with my new business and took me all over the country on a weekly basis.
History so far:

Been put on Acitretin (25mg/day) since July 2015. First 8 months, significantly flared up to a point where I wanted to stop. (No real side effects apart from the fact that I started to look like a lizard )

Derm advised after 9 months to increase to 75mg. All my psoriasis cleared after a couple weeks but, then all my other problems started:
Dry lips - I had never used any lip balm in my life as I did not believe in them. Suddenly my lips were so cracked and sore, I had to start using them. To a point where I would use a tube of 15mg in a couple days time.
Insomnia - Not sure if that is a side effect but during the time I was on 75mg - my sleep pattern was severely disrupted. (Coincidence?)
Hair Loss - lost about 70% of my hair on my head, including my eybrows and beard. Lost 100% of hair on my legs and arms. Looked like I was shaving them.
Sore finger tips - This is the one thing that is really getting me down. Feels like I have ingrown fingernails all the time. (Nails are kept short and tidy). Some days it's a real struggle just to put my wristwatch on. The thing is, I work with my hands - tried gloves but that just makes me bump my fingers even more. At this point I just push through the pain and work. (being self employed does that to a person   )
Peeling on palm and feet - yeah, painful is all I can say about that.

Three months ago, I told the Derm that I am changing my dose to 50mg a day. Still have sore fingertips. Hair has started to grow back. Some patches have come back on my arms (I can live with that - Long sleeves!). Lips still very dry but manageable. Peeling of feet and palms are now minimal.

Feeling better about myself but I still think that there are better stuff out there. Acitretin is poison!

Derm has cancelled my latest appointment now three times and still do not have a rescheduled date for another appointment . Going to phone them on Monday to find out what is going on? I need to change my medication.

Sorry for the negativity but this is just what my experience was/is.

[Caroline]

Hi Henry,

Yes it is very possible that Acetretin is not the stuff for you. That is depending from person to person, there are some who do very well on it, for others it's indeed like poison.
As far as I can see, you got the same side effects as all others on Acetretin.

Don't worry, there are plenty of others to try out.
If your derm still wants to stay with the systemics, than Fumaderm would be a nice one to try. Has also side effect, but much different.

One step further you come into the bio's' where recently some very good ones have hit the market, e.g. Think of cosentyx. They are quite more expensive so hopefully your insurance will cover it.

Good luck at your derm, and don't go away before you got something else

Cheers,
Caroline

[jiml]

Thanks Henry for posting your experience it does sound as if you are not getting the best attention from your dermatologist........yes you need to tell him how bad you have been and I recognise your plight about being self employed ....you do have to push on through the pain.....but your dermatologist should be looking at you and accepting that Acetretin is not suited to you, and get you onto something else ...being on the drug since July 2015 and still no clearance ...he should have moved you on a while ago

Caroline has made some good suggestions for you I would look in the "prescribed treatment boards" here and learn what is available and be ready to ask for something else,  moving forward don't accept a step backwards i.e. Methotrexate or uv treatment
Ask questions here if you have any and we will I'm sure point you towards our preferred treatments and will gladly answer questions about them

[Fred]

Hello Henry, I've been self employed I understand.  

Get angry and push your dermatologist, it's your life they are playing with.

[jiml]

Hello Henry, I've been self employed I understand.  

Get angry and push your dermatologist, it's your life they are playing with.

that's what I meant   well said Fred

[Fred]

Hello Henry, I've been self employed I understand.  

Get angry and push your dermatologist, it's your life they are playing with.

that's what I meant   well said Fred

I'm in short post mode.

[elpuno]

Hi henry, 

That Sounds really sad. As all other already said: some people really come clear with it and for others it is like a bad trip. 

I was on 30mg for sie weeks and had some side effects like dry lips and like you - insomnia. After 6 weeks i reduced to 20mg and Most of the side effects passed. So i can imagine what 75mg per day can cause and i hope i never have to take that dose. 

But, and that is the good thing, there are a Lot of other meds to try. All the best and try to stay positive. 

Phil