Neotigason Experiences?

[elpuno]

Hi @all.

There are some threads here about Acitretin but i will start a new one. Maybe we can change some experiences and get some answers on open questions.

my name is phil and i am from germany so please excuse the wrong spelling and other mistakes :-) i read a lot in this forum and now i decided to give you a bit of my experiences back. there is a lot of information in this forum and all of you seem to be very nice people :-)

i am 34 and in the middle of may (so about 4.5 months ago my hand started itching. The dermatologist (is that right) said "ekzem" and gave me cortison creme and said "good luck". after 2 months of using the cream and a lot of other creme i went to the dermatologic clinic here in munich because they are specialized for treatments of the ekzem. they also said: ekzem (second time i had the diagnose of a ekzem).

So i started with a PUVA-treatment at the end of juliy until the beginning of september. it helped a bit but not as good as i was hoping and so they decided to give me toctino. The doctor that had to decide about the dose (he is something like the superstar in this hospital concerning all things with psoriasis. and, surprise: he is really nice) took a look at my hand and said that toctino is not the right medicine for psoriasis pustulosa and i had to take neotigason. nice, after 1.5 months i finally got a new diagnose.

anyway i started with 30mg per day four weeks ago. minimal side effects (i am always tired, sometimes i got a headache) but the skin on the hands and the feet is really really peelng off. blood values are also very good at the moment.
 
but no itching and no pustulosa at the moment only red skin on the hands and feet and i hope the peeling ends soon, i heard and read that this is a normal side effect. will continue with the 30mg per day until i went to the hospital in 2 weeks. 

so long, greetings from germany and all the best to all of you
philipp

[JohnB]

Hi Philipp and a warm welcom to the club and to the Acitretin Gang   .

Ive been on it since April and the peeling of hands and feet started about 2 weeks into the course along with hidiously dry lips.  Then I went from 25mg to 30mg a day and the peeling got worse.
First the good news the dry lips are abating  - very slowly and the Ps has significantly imroved to the point of a few small flaky bits and some discoloration where the big blotches used to be.
And now the bad the peeling is just as bad as it was when i first started and on the feet in particular it can become quite uncomfortable. I just hope it clears up soon. I have been informed that it should   .

Do you get the sticky skin when you get wet?

The headaches are unfortunaetly a common side effect.

Although the side effects can be a bit of a nuisance stick with it as the results are worth it even tough it is not a quick fix.

Any questions please dont hesitate to ask, there will always be somebody around with an honest answer

JohnB

[jiml]

Nice to see you have started your own thread Philipp.

It will be great following your experience and watching the comparisons with others in the acetretin gang

Good luck

[elpuno]

Thx @JohnB for the information. Now I am a member of the Acitretin Gang, yeah!

To answer your question: when i started with the Neotigason i used to sweat very often and fast. Even when i was just sitting around or chilling on the couch. I think my body now got used to the Acitretin and it stopped. Same with the sticky skin. At the beginning is got sticky skin but at the moment it has stopped. The peeling started also after 2 weeks.

You are on Acitretin since April. May I ask how long it took that you have seen some results? 

The crazy thing is at the moment: my feet look very very good with only 2 small pieces that remind me that there is something calles Psoriasis. But my hands don't look that good at the moment. They got red skin and a lot of brown vesicles (they don't look like the white fat vesicles i had at the beginning). These brown vesicles are dry and the skin is peeling very fast. Then it takes 2 or 3 days and this process is repeating. Hope that is normal because the doc told me this could happen when I start with the Neotigason. But i think it is strange that it does not like the "normal" pustolosa. Did someone have the same experience?

I don't have any problems with dry lips at the moment. But since i started with the Neotigason sometimes I am really really tired and could sleep the whole day.

Greetings
Philipp

[JohnB]

Thx @JohnB for the information. Now I am a member of the Acitretin Gang, yeah!

To answer your question: when i started with the Neotigason i used to sweat very often and fast. Even when i was just sitting around or chilling on the couch. I think my body now got used to the Acitretin and it stopped. Same with the sticky skin. At the beginning is got sticky skin but at the moment it has stopped. The peeling started also after 2 weeks.

You are on Acitretin since April. May I ask how long it took that you have seen some results? 

The crazy thing is at the moment: my feet look very very good with only 2 small pieces that remind me that there is something calles Psoriasis. But my hands don't look that good at the moment. They got red skin and a lot of brown vesicles (they don't look like the white fat vesicles i had at the beginning). These brown vesicles are dry and the skin is peeling very fast. Then it takes 2 or 3 days and this process is repeating. Hope that is normal because the doc told me this could happen when I start with the Neotigason. But i think it is strange that it does not like the "normal" pustolosa. Did someone have the same experience?

I don't have any problems with dry lips at the moment. But since i started with the Neotigason sometimes I am really really tired and could sleep the whole day.

Greetings
Philipp

My pleasure Philipp.

For me I actually felt the benefit within a couple of days of starting Acitretin as the itching subsided dramatically which was the first real bonus. As for reduction in the plaques they started to recede very very slowly from about week 8. I am now at 24 weeks and the blotches have shrunk considerably. Not quite normal looking skin but I am very happy with the results so far. And here is the BUT . . . . . . . I still have peeling hands and feet. The dry lips have all but gone (there that’s jinxed it ) and I still get sticky palms occasionally. Oh and my hairdresser commented that my hair is thinning.

JohnB

[elpuno]

thx @all for the answear :-)

tomorrow week 5 will be ending and at the moment i feel ok. I really love my feet because they look nearly like before the psoriasis and actually the peeling on my feet seems to be ending.

my hands don't look that good but actually just some pustules and a lot of peeling skin there :-) but the skin is very dry so i have to use a lot of cream. I use a cream called "basodexan" with 10% urea. Anybody has some recommendations for me what i could use?

But one thing at the moment does worry me: i am feeling a bit sick and tired like a got a cold. Maybe i got a cold and these are the normal effects? Also my voice sounds like i got a cold...maybe anybdy made the same experiences? Will talk to the doc next week about that issue. Also my bones and muscles start to hurt a little bit which is also a well known side effect and i hope that is going to stop soon.

So i hope that i can maybe reduce the dose from actually 30mg to 20mg or 30 mg every second day or something like that. 

So that was is my update. Greetings from Germany.
Philipp

[JohnB]

thx @all for the answear :-)

tomorrow week 5 will be ending and at the moment i feel ok. I really love my feet because they look nearly like before the psoriasis and actually the peeling on my feet seems to be ending.

my hands don't look that good but actually just some pustules and a lot of peeling skin there :-) but the skin is very dry so i have to use a lot of cream. I use a cream called "basodexan" with 10% urea. Anybody has some recommendations for me what i could use?

But one thing at the moment does worry me: i am feeling a bit sick and tired like a got a cold. Maybe i got a cold and these are the normal effects? Also my voice sounds like i got a cold...maybe anybdy made the same experiences? Will talk to the doc next week about that issue. Also my bones and muscles start to hurt a little bit which is also a well known side effect and i hope that is going to stop soon.

So i hope that i can maybe reduce the dose from actually 30mg to 20mg or 30 mg every second day or something like that. 

So that was is my update. Greetings from Germany.
Philipp

Good morning Philipp
Well I certainly hope the muscle and bones aches do stop soon. I can't imagine that is very comfortable. As for the peeling hands all I can recommend is the Forums favorite - a good quality virgin coconut oil. Personally I use either that or Dermol but I am fighting a loosing battle on the peeling hands front.
As for altering the dosing regime it may be a little too early to reduce, but it is worth talking to your Dermatologist if the aching is getting you down.
The voice thing could be down to dry nasal passages. Dry mouth nose and eyes are all possible on this stuff.
Hope that helps if not keep on asking the questions, we are all here to help each other.
JohnB

[elpuno]

thx, just got some coconut oil and will try it during the next days :-)

[elpuno]

hi, here is a short update with a picture of my hands...not creamed. 






anyone can say if that looks normal after 5 weeks? or bad? or good? or any other ideas? 

kind regards and a great weekend @all

Philipp

[JohnB]

hi, here is a short update with a picture of my hands...not creamed. 






anyone can say if that looks normal after 5 weeks? or bad? or good? or any other ideas? 

kind regards and a great weekend @all

Philipp

Hi Philipp
I can only go by my own by my own experience and mine don't look too different - at 24 weeks   they have looked an awful lot worse. But I have been reliably informed that your body does get used to the Acitretin eventually and things like this should settle down, I would suggest sticking with it if you can.