Lymphomatoid Papulosis

Hello,
I am new to this group.
I to was diagnosed in 2011 with LYP
I am currently having a bad outbreak.. any thing that you have found that helps or makes it worse?

I am told by my doctor to keep the area moisturized. Do not let it get very dry. Otherwise, ask your doctor for some of the creams mentioned by others in these posts. After over 30 years with it, I'm not sure I really have the answer as to what really helps or makes it worse. I'm sorry you have to go thru this. Linda

Hi, my name is Celeste. I first started having lesions in 2017 at age 23. At the time, I was in nursing school and could not focus on what they were or seek out any dermatologist. A couple of years later, still having outbreaks, I went to my primary care doctor who thought it was just dermatitis and did not give me a referral to dermatologist. So i sought out one on my own, they did a biopsy and the pathology report showed the CD30 cells. She mentioned it could possibly by lymphomatoid papulosis, but she was hesistant to diagnose because she didnt know much about it. I was treated with one sterioid cream that did not work, then the clobetasol ointment that did work well for them. But still, she didn't diagnose me and look into it further. The lesions look exactly how all of them look online. My flare ups arent frequent but I am in the middle of one right now, and its a little frustrating because I cant really put a name to it (i dont know why i feel like it would help to just have the diagnosis). Does anyone have any suggestions on how to prevent the flare ups? So far Ive seen no hot showers, hot tubs/jacuzzis, no alcohol, and cotton clothes. Anything else anyone has found helpful? Also, seeing this forum was really helpful just to know there are others out there. The dermatologist told be it was pretty rare.

Anybody here has this???

Hi @cherokee14 and welcome to Mayo Clinic Connect. I wanted to introduce you to some members you might be able to relate to so I move your discussion here to: Lymphomatoid Papulosis - https://connect.mayoclinic.org/discussion/lymphomatoid-papulosis/

Can you share with us a little more information about your situation? When you were diagnosed, what type of support are you looking for, etc.?

I was diagnosed with this on the 19th and I am inquiring about what not to do to avoid break outs

I got diagnosed with this on the 9th of July..I haven't had but 1 flare up
so I was wondering the triggers of this

Hi, I was diagnosed with Lymphomatoid Papulosis maybe 15 years ago and have had it since I was 5, I am now 47! Flare ups come and go and stress definitely increase them… also change of seasons I’ve noticed.. I’ve tried uv treatment, methotrexate and creams.. nothing seems to work! Anyone else have any ideas?

Hello. My 15 year old daughter was recently diagnosed after about 5 months of doctors trying to figure it out. My wife and I have been incredibly stressed, sad, afraid and have so many questions. Have you had to deal with any secondary malignancies? What should we expect? I feel so miserable that my daughter has to deal with this. Any feedback would be appreciated. Thanks