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Lymphomatoid Papulosis

Posted by Anonymous-55c38b0b in Skin Health, Dec 2, 2011

Hi, I was diagosed with Lymphomatoid Papulosis in 2009, after being misdiagosed for 8 years. I demanded a biopsy from my Dermatologist and learned of my unusual diagonosis. I am currently having a slight outbreak- I haven't had one since May 2011. Concerned about possible development to Lymphoma. I know I shouldn't worry, but I do. Looking to connect with someone that also has it and share thoughts and feelings

Tags: Skin Conditions

mettemaj likes this

Posted by @mettemaj, Dec 10, 2011

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.


Posted by @mettemaj, Dec 10, 2011

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


Posted by @krisamaya, Jun 15, 2015

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.


Posted by @mroreo126, Jun 15, 2015

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-
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
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 –
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,
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
fourteen years, I have found that the following will bring on a flare-up-

Only wear cotton- polyester, acrylic, etc....will bring out the “bumps”
Don’t wear tight fitting clothing
Don’t take HOT showers
Don’t use a jacuzzi tub or hot tub- the force of the water coming out of the jets will bring out the bumps
Chlorine pools tend to bring them out
Avoid alcoholic beverages
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.

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
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
Medical Center in Providence, RI. Here is his information if you are interested:

Marshall E. Kadin, MD
Professor of Dermatology
Boston University School of Medicine
Dept. of Dermatology and Skin Surgery
Roger Williams Medical Center
50 Maude Street
Providence RI 02908
Dept. phone 401-456-2521
Office phone 401-456-5771
Cell 401-447-0067

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


Posted by @krisamaya, Jun 15, 2015

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?


Posted by @mroreo126, Jun 15, 2015

Hi – I don’t know if it won’t attach because of it not going directly to your email. If you provide me with your personal email we can
probably communicate better.

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

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Posted by @paul0, Jun 17, 2015

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

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