Health Boards
Tue-01-08-2017, 01:47 AM
I've had PPP for about five years and about six months ago it became pretty much unbearable, so I caved in and told my dermatologist I'm ready to try the oral meds. Three months ago I started on Neotigason/Acitretin 25 mg for two weeks and then upped it to 30 mg until I saw the dermatologist again. The worst of the side effects were that my lips were peeling badly and the inside of my nostrils was incredibly sore, but my hand and foot were definitely improving, to the point where I can show my hand without the PPP being obvious.
Wasn't particularly happy with the coating on my palate after eating, some dizzy spells, very dry skin all over, itchy spots appearing on my legs, hair loss - most of the usual side-effects. I was advised to cut back to 25 mg to lessen the side effects, and that's helped. Still get patches on my legs that I never had before and they itch, and spots on my arms itch too, mainly in the evenings. I stuff QV intensive moisturiser up my nose at least twice a day now instead of on my hand and foot which helps the dry and sore nostrils. My lips have improved but still get dry. It's been quite something to see how much skin has peeled off both of my feet, top and bottom, in places I never had PPP. When my skin is wet it becomes disturbingly smooth and sticky, and I have to be careful in the shower that I don't slip on the tiles. My foot hasn't improved as much as my hand, but apparently feet take longer. I'm glad I can walk without a limp now, though!
I could do with some advice: My hair has been thinning and I'm worried enough about that, but it's my eyebrows! Although I'm a brunette, my eyelashes and eyebrows are quite light and the Neotigason seems to have thinned what little I had in the way of eyebrows to the point where they're not obvious at all. I always used an eyebrow pencil to fill them in to make my face look less 'blank', but there's not much left at all anymore. I'm wondering about costmetic tattooing to help my self-esteem but I'm worried that the effect of the Acitretin on my skin may cause more problems. Does anyone have experience in cosmetic tattooing, or general tattooing, while using Neotigason/Acitretin?
Thanks to all for sharing their stories and making us all feel less alone in our struggles with this disease.
M.
Wasn't particularly happy with the coating on my palate after eating, some dizzy spells, very dry skin all over, itchy spots appearing on my legs, hair loss - most of the usual side-effects. I was advised to cut back to 25 mg to lessen the side effects, and that's helped. Still get patches on my legs that I never had before and they itch, and spots on my arms itch too, mainly in the evenings. I stuff QV intensive moisturiser up my nose at least twice a day now instead of on my hand and foot which helps the dry and sore nostrils. My lips have improved but still get dry. It's been quite something to see how much skin has peeled off both of my feet, top and bottom, in places I never had PPP. When my skin is wet it becomes disturbingly smooth and sticky, and I have to be careful in the shower that I don't slip on the tiles. My foot hasn't improved as much as my hand, but apparently feet take longer. I'm glad I can walk without a limp now, though!
I could do with some advice: My hair has been thinning and I'm worried enough about that, but it's my eyebrows! Although I'm a brunette, my eyelashes and eyebrows are quite light and the Neotigason seems to have thinned what little I had in the way of eyebrows to the point where they're not obvious at all. I always used an eyebrow pencil to fill them in to make my face look less 'blank', but there's not much left at all anymore. I'm wondering about costmetic tattooing to help my self-esteem but I'm worried that the effect of the Acitretin on my skin may cause more problems. Does anyone have experience in cosmetic tattooing, or general tattooing, while using Neotigason/Acitretin?
Thanks to all for sharing their stories and making us all feel less alone in our struggles with this disease.
M.
. All you describe , I am acutely familiar with, pealing feet and hands were epic and the dry lips were on the whole somewhat unpleasant but they were all worth putting up with for a flake and itch free life. I didn't suffer from the itch you describe but it is a known side effect. My hairdresser noticed the change in my hair, it went thinner and curly. I followed the same regime 25 - 30 - 25mg and up until getting an umpteen week headache was quite happy to continue. It was stopped by the Dermy until they had run some tests. I am now back on at 10mg daily and up to now no side effects. So back to your questions. I wouldn't be too worried as all the side effects do calm down eventually and all are reversible once your body gets used to the drug. As for the tattoo, personally I wouldn't. As Caroline has said any skin damage is a magnet for the Ps to take hold. Every burn scrape and graze I have ever had in the last 10 years that has not been on a hand has progressed to scale. I can understand that as a young lady, looks do matter, could you have the temporary ones done that don't break the skin? 
to the club, I'm afraid I can't help with your acetretin query but I do know that several of our members do use it, I see JohnB has answered and he has posted a lot of his experience here 
