My skin doesn't tear anymore. If I bang my hands on something no marks unlike before when my skin would peel like a grape. I still have the milia occasionally but I pick those off and they go away.
Have they checked your ferritin level lately? Supposedly, our condition is chronic but manageable if our ferritin levels stay within acceptable levels. I've completely cleared up and skin on hands is durable again. I don't have the exposure you have to animals but I've noticed when I am doing yard work I have lots more scratches than I used to. Maybe it's because I'm more careless now and in a hurry just to get it done or maybe our skin will always be more susceptible to scratches and scabbing.
I'm so much better now though. The red and purple scars have turned white like old scars eventually do. I don't think my hands will ever look good, but at least their not hideous anymore.
Hope you are well Denise. Sorry to hear about the GI trouble and hopefully it will get resolved soon. Hope that helps.
Take good care,
Thanks, the tearing of my skin has stopped too. These marks are from toenails kind of like puppy toenails. I think maybe I can handle this much better than the way it was before. My hands aren't bad and I am guessing that your milia will also be gone like mine is. I have so many scars on my arms and the inside of my elbows from bloodwork. Sometimes I look at my arms and I feel like a junkie with all the scars. I think every phlebotomy and needle ***** from blood work is now a scar.
I was at the dermatologist a few weeks ago and asked about the delicate skin. It doesn't tear but scratches sometomes scab over even if they don't draw blood. He was absolutely pleased with my blood work and lack of a viral load. He did say that the porphyria will always leave me / us with more delicate skin. He also said that as long as the liver enzymes are low we won't check the ferritin levels. I found out he specializes in infectious diseases of the skin (I read his certificates. He was absolutely thrilled with how my skin has become, he said I made his day with a smile from ear to ear. I just love that doctor, there should be more like him!!!
Thanks for sharing that. Yes, the backs of my hands are not as tough as they used to be. I get nicks and scabs too but at least if I hit my hand the skin doesn't peel back and leave craters in my hands. No more blisters either. I wear Playtex gloves to clean and yard gloves outside.
I'll bet your dermo was thrilled at the good news. Ironically, I saw my dermo 3 wks ago for a rash under my arms and I told him I was currently treating and UND. He seemed quite happy also and said I was lucky because some people do not respond to tx.
I really owe him a lot because he was the first to diagnose the PCT which got the ball rolling and eventually diagnosed with HCV.
He said three things could cause the PCT. Was I a heavy drinker? Nope, hadn't drank in three years. Was I on hormones? Nope, passed that 3 years ago too. Ok, then let's get you tested for hepc. I remember saying oh s-hit to him and the rest is history.
He's a very cool doc too and my local hepa could take lessons in patient etiquette and communication from him. Glad all is well with you Denise. So happy for you.