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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
mettemaj

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.
Mette

mettemaj

Posted by @mettemaj, Dec 10, 2011

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

krisamaya

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.

mroreo126

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
email- mkadin@rwmc.org

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

krisamaya

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?

mroreo126

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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paul0

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

smgarner1

Posted by @smgarner1, Dec 6, 2016

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?

kanaazpereira

Posted by @kanaazpereira, Dec 7, 2016

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?

smgarner1

Posted by @smgarner1, Dec 7, 2016

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.

crhp194

Posted by @crhp194, Dec 8, 2016

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.

mrsoreo126

Posted by @mrsoreo126, Dec 7, 2016

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!

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