Acitretin/Neotigason & PUVA experience

[tarny79]

Hi everyone,

I was diagnosed with psoriasis 10 years ago and, before that, I struggled on and off with eczema since I was a child. In addition to using Daivobet, my dermatologist suggested one round of PUVA treatment, which worked amazingly and I was more or less psoriasis free for 3-4 years.

My psoriasis returned in full-force after the birth of both of my children. After my first child, I did another round of PUVA therapy, which was moderately successful. The psoriasis cleared up, but I had returning small patches which I would treat with Daivobet.

After my second child, I did a third and much longer round of PUVA therapy, but the psoriasis returned the moment I stopped. My dermatologist had said that PUVA was my last option, so I pretty much gave up on treatment altogether and decided I would wear long-sleeves and long pants for the rest of my life. It was so time-consuming to visit the dermatologist 3 times a week for light therapy - I was so happy for it to be over!

By coincidence, I went to see a different dermatologist for a different problem, and upon hearing about my continuing battles with psoriasis, she suggested that I try Acitretin/Neotigason. I started with 25mg per day and my psoriasis cleared up completely after 2 weeks! 

I have been taking Acitretin/Neotigason 25mg for 3 months now, and my skin looks completely normal, except for some brown patches from the PUVA. Otherwise, I can actually wear a bikini in public which is something I haven't done in over 7 years!

Of course, I have quite a few side effects from using Acitretin/Neotigason 25mg, which is why I wanted to share this post. My side effects include:
* Extremely dry skin. I have to be religious about moisturising day and night, otherwise my dry skin becomes itchy and irritated. If I scratch my skin, it can bleed easily because it is so sensitive now. I use QV Intensive Body Moisturiser (a product from Australia) which I slather on after my shower in the evening. The texture is a bit like Vaseline but it does a remarkable job of moisturising and keeping the skin soft. It's a bit greasy after you apply it, but it absorbs into the skin rather quickly. 

* Dry hands and feet. In addition to moisturising my body at least once a day, I have to moisturise my hands constantly throughout the day. I have flaky skin all over my palms and the soles of my feet. I'm a bit self-conscious about my dry hands, especially when I'm at a store and I have to hold out my hand for change and the shop assistant will look alarmed at the sight of my dry hands, but I'm happy to accept this over having plaques all over my body! 

* Dry lips. I noticed my dry lips within a few days of starting Acitretin/Neotigason. At first, it was very uncomfortable because no amount of lip balm could make my lips feel normal, but I think I am either used to it now, or it is not as dry as before.

Overall, when I weigh up the side effects to having psoriasis all over my body, I'm happy to put up with the dry skin. My dermatologist wants me to continue for another 2 months before reducing the dosage. I hope the psoriasis will keep at bay for a long time after this because, for once, it is so nice to have clear skin, especially in summer!

I hope my experience above will be helpful to anyone who is considering treatment with Acitretin or Neotigason. I would love to hear about other people's experience also!

[Fred]

Thank you for sharing your experience, I've never tried it myself though we do have some others trying it and I'm sure they will chip in.

But please keep this thread updated as your input could help others.

Welcome to Psoriasis Club by the way.  

Regards.

Fred.

[jiml]

Hi Tarny and   to the club .... I think it's shameful that a dermatologist told you puva was a last resort, when in fact it's one of the early treatments and there are so many more, here you can browse through the threads and see other members experiences and follow the news boards to hear the latest news on treatments

It's so good that the Acetretin is working so well for you and hope it keeps you clear for many years
Jim

Edit
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[tarny79]

Hi Tarny and   to the club .... I think it's shameful that a dermatologist told you puva was a last resort, when in fact it's one of the early treatments and there are so many more, here you can browse through the threads and see other members experiences and follow the news boards to hear the latest news on treatments

It's so good that the Acetretin is working so well for you and hope it keeps you clear for many years
Jim

Edit
A great way to stay in touch with happenings on the club is to subscribe to the free monthly newsletter you can do that by clicking Groups  and click on "join group"

Thank you! Actually, this forum was one of the few places where I found good info on Acitretin before I started the medication - it was very helpful for me :-)

My former dermatologist told me that PUVA was my only option, and that my psoriasis wasn't bad enough for any oral medication. But my new dermatologist told me that oral medication, such as Acitretin, was of similar strength in treatment to PUVA. Also, because PUVA wasn't working anymore, she suggested that I try something else. So I'm very glad I got an opinion from a different doctor!

[jiml]

Yes it's so easy to accept what a professional tells you, I'm glad the forum here has been useful to you as a source of information
I'm sure this information may be of interest to others that have been tossed aside by by uncaring dermatologists, it shows if you are unhappy seek another opinion .....or search out a forum to see what is out there ....In my case I didn't know anyone else with psoriasis so I assumed it was uncommon, and I kept it hidden and for years believed with PUVA I was on the best treatment mixed with steroid creams inbetween treatment courses ...... I know now that I should have been given systemic treatments years before I was prescribed them ......but with forums and greater awareness these days it should be easier to get appropriate treatment early

[Maryam]

welcome! 

And good to read that you found something that works for you.
I think a lot of dermatologist in general are very hesistant with prescribing systemic treatments. I don´t know the guidelines exactly, but you have to try certain treatments before they are allowed to try something else.

[Grizzly Bear]

tarny79


Have you tried coconut oil on your hands etc ?

Works wonders tarny

The best coconut oil is Bionia.

Take are tarny.

GB

[Wooley]

Hi Tarny 

Welcome to the group and great post by the way!

Some excellent advice there and very informative and honest......I am due to start Acitretin soon (so i am told) so it is good to get first hand knowledge of what you have been through on this......I have to say I am not looking forward to this and potential side effects, but as is the case with all of us, we just want to see an improvement in our psoriasis.   I have PPP so its largely confined to just my hands and feet....so I too would be worried about how dry my hands and feet may be (they are soooooooooo dry now!!)......but as you say its weighing it all up....I am also doing the twice weekly trek to the hospital for PUVA, although i am not convinced it will clear my feet, hands aren't too bad....

Sorry it has taken you a long journey to get some resolution for your psoriasis, but fingers firmly crossed it can remain at bay now.....

Wooleyb 

[artemie]

Welcome to the club! Good luck with your treatment and it would be interesting to hear what happens when the dose goes lower in a few months time. and if it influences your dry skin. Agreeing with Grizzly Bear; try coconut oil.
Happy camping here =]  Hang your food high in the trees (bears, or 1 actually)

[JohnB]

Welcome to the club Tarny   and in particular to the Acitretin clan. I'm so pleased that you were able to make an informed decision in to going on Acitretin from this forum. As you will find we are a friendly bunch and always willing to share our experiences on the raft of treatments we ensure to reduce the debilitating effects of psoriasis in its many forms. I was pleasantly surprised to  I see you had noticeable clearance so quickly it is generally a slow burner and can take a couple of months before seeing appreciable clearance. 
For myself, I have been on Acitretin for just over 12 months now, started on 25mg daily, boosted to 30mg but had to reduce back down to 25mg as the side effects of peeling hands and feet and desert dry lips were begining to outweigh the excellent clearance I was seeing. Earlier on this year I had to come off due to a persistent headache. Sadly the psoriasis came back and due to limited options have had to go back on but only at 10mg daily. Suffice to say this low level isn't working, so fully expect it to be increased by my Dermy later on next month. 
Thank you for sharing and I look forward to reading your continuing journey.
JohnB