Acitretin side effects

[jiml]

Greetings, folks.  Been a long while since I've been on.  Must admit that I went through a pretty dark period since I found this group.  I had started Soriatane (think that is aka Acetretin).  Seemed like a miracle at first, but my psoriasis eventually won over, which is when I sunk into a really low depression.  Turns out that I couldn't tolerate the Soriatane, as it made my hair fall out significantly.  I had decided that I would rather be bald and wear wigs if it could rid my body once and for all of the psoriasis, but my depression kept spiraling me downwards.  I finally sought help, and between the psychiatrist and the dermatologist, decided to get off that drug.

I was on nothing from February through April, and then, just before my 60th birthday, found out there was a clinical trial for Otezla (aka Apremilast).  Since the drug costs about $15,000 a year, I knew there was no hope of me purchasing it.  Turns out that if I was able to get in the clinical trial, they would fund the drug for the first year...not sure if that was because I was turning 60, but they DID accept me on my 60th birthday.  

I have now been on it for three months, and it has started working.  I am by no means "cured" (ha...if only!), but I must say that it is the best it has been in many, many years.

   Don't feel like I have to keep banging my head against the wall anymore....oh wait, yes I do.  How in the world am I to figure out how to get $15,000 a year after this first year?  Sigh.  Well, one day at a time.  If it truly makes such a major difference in my life, perhaps I will sell everything I own and stay on this drug for the rest of my life...floating in a sail boat and being tossed by the waves.  I'm not depressed anymore (truly think the Acetretin had something to do with the depression), my feet and hands are getting better, and I don't scratch myself like a cat with fleas!

Hoping I can continue to find time to come back and say "hi" to y'all more often...

Kersty

Hi Kersty
Good to see you back, sorry the Acetretin had such a bad effect, and seemed to cause your depression ....sounds like you did the best thing coming off it, sometimes the side effects are worse than the disease although that's bad enough ....
Great you have got on the apremilist trial and it seems to be working, could be worth seeing if there is any help from the manufacturer, a lot have assistance programmes to help you stay on them ....always worth an ask

Hope you will come back and keep us informed about your progress ....or just for a chat

There is so much information here on the various treatments that you could probably go onto after the trial if otezla is too expensive .....so you might not need to sell all your possessions to stay clear  

But as you say one day at a time ....