Lymphomatoid Papulosis

@04021974 @samanthabryant

Has anyone talked about trying hyperbaric chamber sessions to help heal your lesions? I don't know if it's possible or if it would help, but it does work for sores that don't heal due to diabetes. My chiropractor even has a hyperbaric chamber. You may want to check with your doctors to see about this treatment. Also, you might want to see an oncologist rather than just a dermatologist. I don't have LyP, and I'm so sorry to hear about your struggles and pain with it. I hope you find relief soon.

Hi. New to this group. Diagnosed February 2017...a quick diagnosis so feel I’ve been lucky compared to others on here. On Methotrexate and under Dr Whittaker at Guys Hospital, London. Sores quite large and breakouts regular and very sore. Main issue is sickness caused by meds. So pleased to have found this group, especially as LyP is so rare. Best wishes from the UK

Hi Samantha- I'm so sorry for all you are going through at such a young age. Have you had your surgery yet? Have they given you a diagnosis? I was misdiagnosed for 9 years before demanding a biopsy and got the LyP diagnosis. Right now I have about 10 small lesions on me. If they get itchy I have Clobetasol foam (like it better than the cream- it's greasy and more like ointment) to put on them. When I did not know what they were- I would continue to scratch them- which made more come out. So, I think I am doing well. You have quite a bit going on; where I don't even know what to give you for advice. I hope your diagnosis was a good one, and prognosis as well. I believe more people have LyP -and that it is not so rare (they say 1-2 people in a million). I believe people just get misdiagnosed and are dismissed by their doctors. When my PA in my dermatologist office biopsied me and got the results- she shared with me that she had the same looking papules on her and the DERM dismissed her with dermatitis. She biopsied herself and learned that SHE has LyP. I saw her yesterday because I have also had Basal Cell, Squamous Cell & Melanoma in-situ (Skin Cancer) and have a full body exam twice/yr. I also have bloodwork and Chest Xray annually. My PA told me that her 1st cousin (female) just got diagnosed with LyP. There is a private group of us on Facebook that have LyP with 206 members. I think you should request to join- many of the members have a lot more going on than me and can hopefully give you some good information. I hope your parents are being a lot more supportive. You need someone to advocate for you. What state are you in? Check out http://www.facebook.com/groups/lymphomatoidpapulosis. Good luck and keep us posted!! Kathy in Rhode Island

Hi @ajpicknell and welcome to Connect! It’s great to hear that you were diagnosed quickly and that you have joined the group. However, it’s unfortunate that the medicine is causing you to get sick.

@04021974 took methotrexate and may have advice as to how to handle side affects.

@ajpicknell what kind of sickness or side effects are the meds causing for you?

I have had this disease for over 30 years. I will be 65 in two months. At first I was told my days were numbered. Yet I'm still here. Then I was told it was MF.. mycosis Fungoides. A couple of years ago they decided it was LyP. Not sure what I believe

Unlike many of you i have had many biopsies over the years. either inconclusive or cancer. Yet again here i am over 30 years later.

I can be clear for months. Sometimes barely anything some years. Then there are the bad years and I have the scars and the stained skin to prove it.

I get bumps on my back and all over my front and arms. They are sometimes itchy and occasionally painful when scratched by accident. However it is my legs that get the brunt of this disease. That's where I get the reddest rashes and bubbly bumps that itch all day.

I always debate whether to use the steroid cream that stains my legs forever or suffer. Right now I'm using the cream. A medieval steroid rather than the strongest.

I avoid shorts or swimming when I have the outbreak s. Tired of the questions all these years.

I use ice on the area that is itchy.. I also keep the steroid cream in the refrigerator and it helps with the itch.

I was told years ago not to use sunscreen on arms and legs to prevent the bumps. Frankly I have no idea if it works.

I just had an unusual situation in my arm. I had a non latex bandage on and it caused quite an eruption. It was changed daily. Four weeks of steroid cream calmed it down but I believe it is stained forever

I don't believe that a bit shower or massage has caused eruptions but don't know for sure.

Stress. I was told stress has an impact. My only take on that is that I can't tell. I will have a stress period then no stress for a long time and get an outbreak in the no stress time. I have suspected for a long time that the rashes and bumps have a delayed reaction it can be even months later.

Does anyone else know they are coming before they appear? My skin starts feeling taut and I just know they are coming.

I wish you all well with this. I'm sitting here itchy like crazy. Need my cold pack. Please keep up the discussion we can try to help each other.

HI @lindal89 and welcome to Connect! Thank you for sharing your story. It must be frustrating having limited control over outbreaks, and disconcerting being able to feel they are coming.

@mroreo126 @jgsounds and @samanthabryant all have lymphomatoid papulosis and can sympathize with you and may be able to provide support.

@lindal89 You mentioned how a couple of years ago, they switched your diagnosis from mycosis fungoides to lymphomatiod papulosis. Do you know what led them to change their diagnosis You mentioned how a couple of years ago, they switched your diagnosis from mycosis fungoides to lymphomatiod papulosis. Do you know what led them to change their diagnosis?

Hi Ethan, That is a good question. My doctors from 1988 till a couple years ago did frequent biopsy's and the prevailing thought from the UCLA and USC doctors was that it was on the line but the markers seemed to indicate the Mycosis Fungoides for many of the lesions. Some lesions were benign. That is what I operated on for all those years. I changed dermatologists due to a move and this one did not believe it was MF. They took another biopsy in August of this year and the diagnosis was not MF. It was LyP. The change in diagnosis was important, but I tried over the years to not let the diagnosis define me and try to live my life. I travel all over the world and try to not let the outbreaks stop me, but I do realize that many people on this chain have more serious outbreaks and cannot do what I do.

The ice pack on the outbreak that was recently recommended by a doctor and putting the steroid cream in the refrigerator has really helped (but not totally) with the itching.

Even after just about 30 years I really can't figure out why they show up. I look forward to reading these posts and seeing if we can help each other cope with them. Thank you for your reply.

Hi,
I just found this thread and was wondering if you all could give me some insight. I was diagnosed with ALCL in 2017 and then upon further review they said I actually probably have LyP. That's been the primary diagnosis ever since. Recently, my husband and I have been trying to conceive and have had no luck. I've been to my OBGYN and was told that they weren't really sure if it was a good idea because they had never treated a person with LyP before, and they are worried pregnancy would just make it worse. Has anyone on here gotten pregnant with LyP? If so, did it affect your LyP at all? Any information or insight would be appreciated. Thank you all so much!

Hello my name is Danielle! I jus found out I was diagnosed with Lymphomatoid Papulosis maybe 3 months ago. I thought it came from a dog I had that was sick but my doctor says not. I’ve been on this medicine called Methotrexate which some people heard about for almost 3 months. I haven’t seen any progress taking the medicine more spots have showed up lots at a time and the symptoms are not getting better. Also the ointment isn’t working eithter. At this point I don’t know what to do. Should I change doctors or what should I do about this??? Any suggestions or ideas of what I should take?

Hi @shewinning and welcome to Connect. It must be frustrating that you are unable to find relieve with your current medication.

@lindal89 @mroreo126 @jgsounds and @samanthabryant all have lymphomatoid papulosis and can sympathize with you and may be able to provide support.

Back to you, have you brought your concerns up to your doctor? What have they said?