Lymphomatoid Papulosis

Hi, my name is Kathy. I have LyP and was misdiagnosed for 9 years- eczema, dermatitis, allergic to Bounce fabric softeners, folliculitis, etc. Went to PCP, 2 different dermatologists and an allergist, & derma-pathologist. Finally when I had 4 bumps pop up on my wrist, I pretty much demanded a biopsy from a new PA in my dermatologist's office. It was strange because she mentioned she had something similar on her and the dermatologist there thought it was nothing. After my biopsy came back positive for LyP- she biopsied herself and learned she has it as well! I think it is much more common- than they say. (They say 1-2 in a million people) I have had a very good (fingers crossed) past 6 months with little to no outbreaks. Just a spot here or there. You said that you are finding that the older you get the worse it gets, but I am finding the opposite. I don't recall having it before 2002. I was extremely stressed at the time- would have the bumps constantly- itching and scratching them until some bled and scarred over. Mine almost always show up on my stomach and back. Now that I am aware of what I have and aware of what my triggers are, I avoid the following: I don't wear anything but cotton for shirts. I cannot wear a sweater or I'm asking for an outbreak- unless I wear a cotton cami underneath. Stress is the biggie and hard to control that one- but this year I have been stressed and have done very well. Avoid alcohol. I usually would go out on the weekend and have a few drinks, and now I hardly drink at all and have much fewer outbreaks. No hot showers! Jacuzzi or hot tubs where the jet sprays directly on you- I will have outbreak. Using a heating pad on my back when it's sore- outbreak. Very cold weather will cause outbreak for me. I think even the friction of a massage, or someone scratching my back will cause an outbreak. I went for a great massage a few years ago, and could sense the bumps were going to be popping up- sure enough. So- no more massages. Once a year I go for bloodwork and have a chest xray. I have been told I have a 20% greater chance of developing Lymphoma because of LyP. I have seen pictures on the web of some really bad, bad cases of LyP. I can't even complain when I see those. Mine are usually fairly small and I may have over a hundred or just a few. I use Clobetasol propionate foam when I have an outbreak. I like the foam much better than the greasy cream. I also saw an expert here in Rhode Island on LyP. He is a Pathologist, Hematologist who is primarily involved with the Lymphomas, and an expert on LyP. His name is Marshall Kadin MD, and he practices at Roger Williams Medical Center in Providence, RI. He can be found on LinkedIn. He has published articles on LyP. You should be able to locate them on Google. Good luck to you! Keep me posted with your progress!

I take methotrexate for aortic giant cell arteritis, starting in August 2016. To date, I have had no problems with this drug. It does make me feel sort of dragged out but this is quite manageable. I make it a point not to read the side effects of any drug unless I feel something. Otherwise, reading the side effects might make me watch too carefully.

I am a 75 year old woman who has had LyP symptoms for 50 years. I finally got a biopsy. I don't understand why so many of us had to wait so long to be given a biopsy. Originally I was treated with prednisone, which led to prednisone induced diabetes, which then led to chronic kidney failure and then to dialysis. Prednisone was the only medicine that has ever been used for me. I believe, since it takes so long to do a biopsy, that this illness is not as rare as it may seem.

Hello @marilynnm,

Thank you so much for sharing your history, and joining us on Connect. I encourage you to read through the past messages of this discussion thread, where you’ll hear about the experiences of @mroreo126 @mrsoreo126 @smgarner1 and others with LyP.
@marilynnm, may I ask if your doctor explained the reason for prescribing prednisone? How often do you get outbreaks of LyP? Have you noticed any triggers?

@marilynnm Marilyn, I just googled as I presume you have done. I did not fully read the article but saw that this manifests itself on your skin, is that correct. Why do they do a biopsy on it? It says it is very rare. Are you aware that there is a group on AOL called the "Cheetah Club"? It could be a good resource for you.

Here is the link I looked at, not really thoroughly though since I am need to get to bed.

https://www.clfoundation.org/programs-resources/newsletters/mff-forum-edition-1/lyp-the-missing-link
JK

Hi I am Lori
Is anyone still on here that has this condition
I was diagnosed several years ago
I am having a severe outbreak
Need some advise on things to use to calm it down

Thanks
Lori

Hi Lori @loridetch,

Welcome to Connect. I'm confident that @mroreo126 @mrsoreo126 @smgarner1 @marilynnm @krisamaya and others will return to share their experiences with LyP. @loridetch, what symptoms are you experiencing with this recent outbreak? How have you been coping with this condition in the past? What is your biggest concern?

Good morning and thanks for replying. Recently I have a severe outbreak in my chin and in my mouth. They took another biopsy to see what new is happening. I have several sores on legs , thighs and even my feet. Ones on my face are very painful and the lymph nodes in my neck are swollen. Any suggestions for relief?

Thanks
Lori

I’m new here, and I have been suffering for the past year with possible LyP as yet I’m undiagnosed, I saw a dermatologist here in the UK after a 3 month wait time., his immediate response to my rash was LyP so I have been sent for a biopsy in 3 weeks. My concern is my current flare up is healing now, and I might only have scars and hyper pigmentation by the time I go for my biopsy.
Does anyone know if the lesions need to be active for a biopsy to be performed?
Thanks

Hi, I just discovered this group, and thought I'd join to answer your question, altho now probably too late for your appt. I had a similar situation, where, by the time I went for the biopsy for a lesion on my leg, it was too late, it had pretty much healed. Then I wished I hadn't gone because they wanted to do the biopsy anyway and of course nothing showed up. I had gotten diagnosed just months ago then (it was in 2012), so was quite concerned. I didn't have any lesions again until recently (I've been lucky, I see from the reports of this group), but recently had some spots pop up on my arm. Was curious if I should get them treated or not, since the lesions are 'self-healing' they say. I had remembered the hemotologist telling me that, but not the leg lesion episode, which you reminded me of, so thanks for that! He's very good, btw, for those who might be in NYC. Dr. Bruce Raphael at NYU Langone center. He's curious, thoughtful, knowledgeable.