coming off treatment and living in fear of flare ups

Posted Sat 2 Feb 2019 21.51 by Laura

Hey guys. I’m 23 and have had scalp Psorasis for the last 5 years but never saw a doctor or treated it. In January 2018 it spread to my face but only mildly with one spot. It went away in two months however came back quite bad on my nose, cheeks and forehead in October the same year, but wasn’t itchy or flaky. It was just dry and red. They gave me steroids which worked great until I stopped using it after a week and got what I think is the ‘rebound effect’, because my skin came back worse than before. I’ve been suffering with it on my face for 4 months since that rebound and have only recently been referred to a dermatologist. He gave me protopic and I have to say it is working well. I’ve been on it 9 days and my partner says it’s cleared up loads. I’m suppose to use it for another three weeks once a day everyday and then every other day for 2 weeks and then twice a week until my next derm appointment in March. He wants me to taper off slowly so I don’t have a rebound again. Question... what is everyone’s experience coming off protopic? Or any other treatment you were given for that matter. Did your symptoms go away and how long for? And how bad were they when they came back? How long did they last when they came back and were they mangable? This has had a massive effect on my mental health and I developed depression from it and body dysmorphia. I haven’t looked at myself in a mirror in 2 months because I get so upset and depressed. My biggest fear right now that this pro topic is working, is it coming back again. I want to know if protopic will keep it at bay for a good amount of time and can I use it again if it comes back? I feel like I live in constant fear of a flare up. I’m scared i’ll finally go into remission and get my life back and then BOOM flare up and I’m back to wear I started feeling miserable and depressed again. So that brings my next question... how do you live with it? How do you not worry everyday about it coming back and if it’s going to be a bad flare up or not. I’m scared everyday and literally think about it all the time. It takes over my life. I’m so depressed from this i’ve had to be of work sick and start counselling. I don’t know how to not think about it constantly and just live my life regardless and love me for me. It feels impossible right now and I could really do with some support.

Posted Mon 4 Feb 2019 13.11 by Salty Backpack

Hi Laura, I can relate to nearly all of your post and sadly i lived the same. I have had psoriasis for nearly 7 years (26 currently) and i have gotten into the habit of avoiding mirrors, even if my skin isn't the worse.... i believe it is. All i can say is that unfortunately it will come back, especially my face is the most stubborn...i have been on methotrexate, acitretin and UVB treatments...it always returns in time. HOWEVER i started a diet after reading pagano's book and my skin has gone from strength to strength to the point now where i have a few dry bits on my face but near enough the same colour...rest of my body has minuscule spots which i don't get stressed over. (this has taken 3/4 months to improve) form here i learnt that it may be beneficial to take Flaxseed oil, Omega 3 oil, Vitamin D & multivit followed by taking yakolt in morning and blueberries throughout the day. I find that when my skin is good, i don't think about it for a few weeks and in the background smaller spots improve and no more appear. I have also taken up acupuncture which i believe has helped so maybe look into this? Hope this helps.

Posted Fri 28 Jun 2019 14.34 by Originalbeany

Drink lots of water every day cut all the bad drinks/foods out, i'd definitely recommend celery juice and blueberries not the best of tastes but they do help they've helped me a lot. i do them every morning on an empty stomach as soon as i wake up.

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