MariaC- Thank you for your kind words. The first time I went into remission it was during a pregnancy. I did not even know it was PN, but I had it on my scalp for about 6 years. It was there and then it wasn’t. I was caught up in postpartum, motherhood, and life and didn’t give it much thought. It reoccured about 7 years later I had moved from the US to the UK and then Canada. I saw doctors in all three countries, but no one knew what it was. I was so miserable. I saw a doctor that was 99 and worked 1/2 a day a month. He was excited and said he knew 100% what it was. I had never heard a doctor know anything 100%. He said a name for it but I did not remember the name because quite frankly I thought it was just another wrong tree to bark up. He ordered a topical that had 3 medicines in it. Within a couple months it was gone. It remained gone for about 12 years. That medicine was taken off the market. From memory the compounded drugs I had made, were not useful. I even went to Mexico because I saw they had a drug that seemed like the one he gave me, but nope. All my medical records were destroyed in a fire and I had changed countries. About 5 years ago it returned. They finally had a name for it and a biopsy confirmed it. I am miserable, lol, but I do know a remission is possible. I wish I had paid more attention but during those years I developed 5 auto-immune diseases and was trying every new medication that came out for them. I don’t even know what disease to blame for different symptoms from day today, or even know if it was the medications I took to try to cure them, causing the symptoms. I have truly given up on medications. I did try Dupixent. It felt better for a couple months then got much worse. That was only my experience, others have done much better.

Now, I just use gentle products. I try everything everyone on this site suggests if it sounds reasonable, and isn’t medication. Tina Ambassador is a wealth of information. What ever gives me comfort for a minute gives me a minute of comfort. I am currently using ground cloves, I am not sure what I think yet, but I much prefer smelling like a molasses cookie than a oil pit when using coal tar which is my go-to when I cannot take it anymore.

I am waiting to hear what the newest injectable is doing for people. I am hoping to hear a miracle or two. I wish I could just know why I went into remission and tell you straight out but all I can say for sure is that remission is a true possibility.

MariaC-I agree with Tina on every point she has made. I wear headphones all the time, and half the time they are not connected to a source. When I was working as a nurse I wore “Hanes Perfect Original” long sleeve, cotton crew necks under my scrubs. I did this mostly because I was protecting myself from staph and strept. Early in my career I saw a woman with a horrible case of Pemphigus stop eating. I remember changing her dressings. Now with PN I realize how little I knew about skin afflictions, her pain and fear. I would have done those dressing changes a whole different way now. I have often thought we should start at 100 and go backwards to add experience to our empathy and compassion.

So I have had two very long complete remissions so I have hope. I have had PN since my 20’s. I just did not know what it was until the 2020’s.

Also, I just figured out how to answer questions that have had no comments yet. For me I have to go to the Q&A at the top. If I am just browsing the web-site and a new question comes up I don’t see a way to make the first comment. I go up to Q&A and find it the answer it. I don’t know if that is everyone’s experience but I could not figure out how to comment on new questions.

Thanks Tina ! I which I have your mentality and just say f...ck U if they lool !But U encouraged me, thanks !!

The answers would feel more IRL if members answered instead of AI, but nobody does. Can´t everyone read it? do I have to connect/be a friend first with chosen members? Maybe I have misunderstood since I´m not used to social media.

Deb, thanks for your clothing proposal. Your thoughts about skin diseases are exactly mirroring mine. I see myself as a person with empathy but now having PN I really understand the struggel people with skin diseases have. U stay in your cave or put clothes top-down (if U can) and put out the noice and minimize the risk to end up in a discussion with someone U know if U have a bad day, by putting your headphones on. U made me so happy by writing that U have had 2 long remissions. The there is hope for us all. I have had ongoing PN for 5 yrs now with stubborn activity the whole time. Have U tried JAK-inhibitors ? or what was it that made U go into remission ? I´m really curious. The only thing when it comes to therapy I haven´t tried is The JAK-inhib. Will do the work-up before starting JAK this week.

Deb I have started doing like U by going to the Q&A at the top. Thanks for all your information. All the best !