From the Editor
“What works for one doesn’t work for all.”
“What works for one doesn’t work for all, but if it works for ONE, then there is hope for YOU.”
When a PRP patient or the parent of a PRP child has a question about the efficacy of specific medication, they have ONE option: to post their question to the 2,200-plus members of the PRP Facebook Support Group and hope for lots of comments. Comments from the Land of Chat are generally forthcoming. Moreover, the odds are pretty good that a comparable question has been asked many times before by others. Unfortunately the responses to those earlier, medication-specific posts have never been retained by Facebook in a manner that supports retrieval at a later date. In other words, the many insights and shared experiences regarding a specific medication shared by other PRP Facebookers over an extended period of time are not easily retrieved.
It’s time to build a better mousetrap. WHAT WORKS is that new mousetrap. 
Your insights and observations will make it easier for other PRP patients and caregivers to learn more about specific medications. While the focus is on WHAT WORKS, experiences that are less positive should also be shared. Please use “Leave a Reply” to share your insights.
On November 9, 2020, Anita R (Pearl, Mississippi) posted the following to members of the PRP Facebook Support Group:
Has anyone had any relief from using UV light treatment?
Here is the response she received. Please use “Leave a Reply” to share your experience — good or bad.
Billy B — Queens, New York
1st few times in beginning Doctor had me do it but this was before I found out I had PRP -was making me more red.
Caroline W — Awaiting confirmation of location.
the same happened to Billy B happened to me.
Danielle C — Eastchester, New York
I have heard no from a lot of people, however, I had it while I was on methotrexate and the combo cleared me pretty quickly.
Michael M — Green Cove Springs, Florida
My dermatologist, Dr. Camisa, is a UV Specialist. Yet, when I asked about the procedure, he said it would not be effective. After 3 years of medication and topical solutions, I went into remission, where I’ve been for the past 2-3 years.
Mary-Alice F — West Hollywood, California
I don’t think any doctor would recommend this but exposure to the sun was hugely healing for my PRP. At the height of my PRP, I went to the beach in North Carolina with my family and accidentally exposed my arm to the midday sun for about 20 or 30 minutes. It burned immediately, and felt rather uncomfortable. But the next day, all of my lesions and patches were suddenly no longer there. Instead, the skin just looked solidly red and sunburned. This eventually turned very tan (never before in my life had I tanned), and then eventually over the course of about 2-3 months, completely healed. I gradually exposed my whole body to the sun, besides my face, in short increments. And it was the thing that made me turn the corner. It felt like magic. Now the timing of this accidental discovery was very lucky – I was approved to start the clinical trial of Ixekizumab but had not started yet. I have heard sun exposure on many medications is too risky and painful. But in case that’s helpful for anyone, wanted to share my success story with non-medical UV rays—again, not recommended to just get the high sun dose, I’m sure. But one story of UV treatment being very helpful. Good luck!
Brock D — Evansville, Indiana
I almost died the one time I agree to try puva never again. Somehow got a virus and blistered everywhere widespread infection it damn near killed me. Never been that sick before or after that time period. the multiple steroidal ointments & puva were the only things that were different in my lifestyle …
Lucy T — Manchester, England
My partner had it and although it was extremely painful for him we are positive this is what cleared it !
Allison M — Erie, Pennsylvania
It was the only thing that helped me until until medical marijuana. Mainly I take CBD.
Diego T — Barcelona, Spain
I’m on a UV light treatment for 3 years, and it helps a lot.
Donna S —‚ Sydney, New South Wales, Australia
Yes I have! It was my last resort and it actually helped tremendously! I recommend it. You have to start very slowly with it!
Beth R — Bristol, England
I think it’s very hit or miss Anita. As you can see it helps some and not others. When my skin is acute and inflamed it doesn’t help and just hurts too much possibly aggravates it. When my skin is mild or I’m on my way to remission it does seem to help. Good luck if you try it and be a bit cautious
Donald G — Burghill, Ohio
As we all know, “What works for one person, might not work another”.
I have had success with UVB, been doing it since my diagnosis. Started light at 2 to 2.5 minutes each time (3-4 times a week). Slowly increased when I could tolerate 3 minutes.
Now look forward to it when Fall is here, and after two years with PRP, can get 5 to 6 minutes of UVB treatment. I actual feel great after a session.
Cindy W — Watertown, New York
Did not work for me.
Kahless M — Lautzert, Rheinland-Pfalz, Germany
Did not work for me…
Shannon S — Lafayette, Louisiana
Did not work for me!
Andrea W — Wilmington, North Carolina
No, it made me worse.
Doreen A — Bradenton, Florida
Did not work for my hubby. 3 years and almost cleared and now has flared up again
Chris C — Lincoln, California
It made my skin sizzle. It did not work for me, but I think it’s worth trying.
Catherine C — Hampshire, England
Fingers crossed you have more luck than I. The technicians clearly didn’t believe me about my heritage & burnt me 4 times. Worst & funniest at the same time, the nipple protectors were burnt on
Fran — Awaiting confirmation of location
Yes. Combined with acitretin my skin is 90% clear.
Hanan S — Burlington, Ontario, Canada
Yes I had it with acitretin and it was effective for my body but not for the hands and soles lesions. I had 27 sessions. The main side effect that it’s like burn your body so it cause more itching and heat feeling you need to use more moisturiser.
Sian B — Wales, UK
It clears my sons up but then it comes back as soon as it’s stopped
Tea L — Auckland, New Zealand (North Island)
No help for me. Cosentyx cleared my skin . Good Luck
Sally L — Suger Land, Texas
I put my feet out in the sun for awhile. It helps
Kathy M — Riverside, California
I’m in the waiting room for a UV treatment as I read this. This is only my third treatment so I’m not much help. What I can tell you is be cautious. I burned a little on my first time. Our skin is so delicate right now. So the next time they made some… See More
Denise G — LaCrescenta, California
My father had good success with this treatment, however, there were times where he did get red. They constantly monitored and adjusted the treatment. At the end of the day, it helped to clear his skin up and he looked like a brown bear…tan all over.
Sue C — Mashall, Texas
Yes, UV light treatment helped me. I did burn but in the end this is what ultimately helped clear my skin