Lymphomatoid Papulosis

I was diagnosed in 2002 and have had good experience with suppressing the elements with UV-B light treatment. Currently I'm not in that kind of treatment as I'm one of those LyP patients who gets a malign lymphoma on top of it. My doctor is at the Mayo Clinic and I can not recommend that place enough. Please contact me if you have questions or would simply like to compare notes.
Mette

And one more thing: Don't worry! It doesn't add a single day to your life;)

My daughter has had a diagnosis of LyP since September 2014. She has had the lesions constant since the diagnosis. Some of her sores are a quarter size. She has been on Methatraxate (chemotherapy drug) for about 6+ months and it has not helped her symptoms at all. Does anyone know of anything else they have used to show success. She is in pain with a lot of her sores. We are desperate. THanks.

Dear Courtney’s Mom- So sorry for what your daughter is going through. I am 53 years old and have had LyP for about 13 years now. I was mis-<br />
diagnosed for 9 years until I demanded a biopsy. I don’t have anywhere near the size of what your daughter has. Mine will appear to at a time to<br />
100s at a time on my stomach and back usually. They are small (pimple size) and extremely itchy and will bleed and scab over and leave tiny scars –<br />
but has been under good control lately. I have been lucky and not had to use Methatraxate. I am unable to use Phototherapy r/t melanoma in situ,<br />
and basal and squamous cell cancers. Luckily, Clobetasol foam helps me with outbreaks. You didn’t say how old your daughter is. Over the past<br />
fourteen years, I have found that the following will bring on a flare-up-<br />
<br />
Only wear cotton- polyester, acrylic, etc....will bring out the “bumps”<br />
Don’t wear tight fitting clothing<br />
Don’t take HOT showers<br />
Don’t use a jacuzzi tub or hot tub- the force of the water coming out of the jets will bring out the bumps<br />
Chlorine pools tend to bring them out<br />
Avoid alcoholic beverages<br />
STRESS is the biggie- I know it’s sometimes beyond our control- but if under a lot of stress, will bring on a flare up.<br />
<br />
Reading your story- I know your daughter has it much worse than I do. I am so sorry for that. I hope that you are seeing a doctor that is<br />
very familiar with LyP. I live in Rhode Island, and we have an expert here – Dr. Marshall Kadin, he is a Professor of Dermatology at Roger Williams<br />
Medical Center in Providence, RI. Here is his information if you are interested:<br />
<br />
Marshall E. Kadin, MD<br />
Professor of Dermatology<br />
Boston University School of Medicine<br />
Dept. of Dermatology and Skin Surgery<br />
Roger Williams Medical Center<br />
50 Maude Street<br />
Providence RI 02908<br />
Dept. phone 401-456-2521<br />
Office phone 401-456-5771<br />
Cell 401-447-0067<br />
email- mkadin@rwmc.org<br />
<br />
I attached a paper that he wrote about LyP on several years ago. Much luck and prayers for you and your daughter. Take care, Kathy<br />
<br />

Thank you so much for your kind words. Courtney is 20 years old and she just started showing symptoms this time last year. I have noticed with her stress at college they seem to "flair" up more. We have exhausted our efforts with our current Dermatologist and she is now being moved to the University near us with hopes that they have more resources for treatment. Have you ever tried medical or homeopathic treatment for your LyP? I am going to share your doctor's contact information with our new team of Doctors. Thank you so much for your insight to this dreadful condition. P.S. the article did not attach. Do you have the title that I may look it up?

Hi – I don’t know if it won’t attach because of it not going directly to your email.

However, if you go to Google search and type in Marshall Kadin Current Management of Primary Cutaneous CD30+ T-Cell Lymphoproliferative Disorders (or up to CD30+)- the article should come up for you. Note that it was written In November 2009- so, there is probably more updated information out there somewhere. The article is from an Oncology Journal Volume 23, Number 13.

Keep me posted. Good luck! Kathy<br />

Hi it hurt me to see need less suffering there a cream mometasone furate.,google it it a miracle cream. ,you can ask the doctor kif thay saay no google its harmful but work read the instruction stress and diet Are usally the cure

After 28 years of dealing with these spots on my legs, and a misdiagnosed four years ago, today I finally learned the name of this rare disease.
I will start taking methotraxate this week, anyone familiar with this medication?

Welcome to Connect @smgarner1,

It must have been so frustrating for you to have been misdiagnosed! We're glad that you joined us, and you've come to the right place here on Connect to find some answers.

Although they have different conditions, there are many members who have used methotrexate. @jerseygirl926, @crhp194, @lisa_sj99, @nancesti, @lorrainechavez, @debcha, @sherw, @emmur16, @sallyann, @luladavis, @rosestea, @julied838, @mswanda, would you share your experience with this drug?

There is also a great discussion on methotrexate here: http://mayocl.in/2h2kHZY

@smgarner1, how have you managed your symptoms for all these years? Do you notice any 'flare-ups' due to stress?

Thanks for welcoming me!
It's a good feeling to finally meet people that understand what I'm going through.
I noticed that the older I get, the worst it gets.
Yes, stress definitely plays a role in flare ups.
When I was 19 I was told I had a bad case of eczema. I used aveeno products, but it didn't hep.
When I was 36 a biopsy was done and i was told I had cutaneous T cell lymphoma. I used three type of topical cream, that didn't help either.
I just returned to the doctor, my whole file is gone, no record that I visited that doctor was found.
So they took another biopsy and I was informed that I have LyP.
So, all these years nothing helped control or manage the disease, I just learned to live with it.