Before you read this, know that there IS lots of HOPE. One PRP'r described it as a timer going off after a few years and the body was back to normal. My transformation from what is sometimes referred to as the intense stage into the next stage (whatever they call it) happened around January 2015. Since that time I have experienced the following symptoms in order from major to minor.
1) Sore muscles, Sore Joints.
2) Very low energy (and seems to be getting worse)
3) Scalp has minor sores or bumps and is itchy. The bumps/sores usually dry up after a time, then shed skin, and start all over again.
4) Im either perspiring profusely or not at all.
5) My hair has no color.
The good news is that I look clinically fine. The shedding has been reduced to just dry skin that leaves a "dusting", and I havent taken any medication since January 2016.
By the way, if you are still on acitretin after your intense stage, I would definitely question that doctor's decision. I went off it on my own accord, and the doctor was surprised that I was "holding my own" without the acitretin. I believe his opinion is not the norm when it comes to that.
I am very interested in comparing notes on this stage of the disease from those who are currently in it, and those who are in remission. If you are one of the lucky people that had a shortened version of the disease, read this and be thankful. It’s very difficult for friends/family/work supervisors to understand why I dont feel good when I look clinically fine. Quite honestly, I feel that they dont believe it. I have learned to smile and say everything is fine when they ask the question about the status of my disease. I think I have learned to cope and ignore the exhaustion.
I am hoping for conversation on this topic - feel free to respond!