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Lymphomatoid Papulosis
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
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Hi all, I have been recently diagnosed with LyP. Back on March 14, 2018, I broke out with about 10 lesions all along my stomach, inner arms, underarms, and back. I had a few last year in 2017, and they went away with desonide steroid cream (They had been diagnosed as eczema). However, after about a week, one of the lesions became really inflamed and developed a necrosis center that was crusting, bleeding, and oozing. As it got larger it was painful and sore. I originally went to Duke Urgent Care twice and it was misdiagnosed as a bacterial infection and I was put on bactrim and doxycyline. Then I saw UNC Urgent Care and it was diagnosed as a brown recluse spider bite. I was prescribed predisone and dapsone of which I didn't end up taking. I then saw my new PCP and UNC dermatology. That is when they did one biopsy and a bacterial swab. They admitted me to the hospital for IV antibiotics of vancomycin. However, the swab came back negative for a bacterial infection. They then put me on another antibiotic cephlosporin. I had urine tests and blood work done. Currently, no signs of cancer in my blood or protein, etc in my urine. Then I was released from the hospital after four days. All along the lymph node under my left arm has been swollen and still is, and I feel like I have the flu. Very fatigued, sweating episodes, and fever episodes. I didn't originally have an appetite after taking all of those antibiotics, but now I'm drinking Kambucha tea, eating yogurt, and taking a daily probiotic which now I have an appetite. So after being released from the hospital, I was still feeling awful and no improvement for my lesions. They gave me a strong topical steroid clobetasol, but it only seemed to be helping minimally. So the following week I scheduled an appointment with UNC dermatology. I was able to see a dermatologist who specializes in lymphoma. She said that my lesions were characteristic of LyP and prescribed predisone for me. I have been on it for 5 days now, and together with the topical steroid, I have seen dramatic improvement with my lesions. The smaller ones seem to be fading away and even the larger necrosis one is breaking up and healing a little better. The inflammation seems to be going down. I can't tell whether or not my lymph node is decreasing in size. Maybe a little bit. However, I still feel very fatigued, get hot very easily and have sweating episodes, and a difficult time sleeping. I also have had a dry tickle cough for five weeks now. In addition to visiting UNC dermatology, I scheduled a PET scan and thankfully it came back that all of my organs are fine, but some of my cutaneous lymph nodes were lighting up with a higher metabolic activity. I am supposed to see the lymph node specialist this week for a possible biopsy, the dermatologist for a follow-up and possible second biopsy, and the oncologist.
Any suggestions regarding trying to reduce the occurrence of these lesion outbreaks would be super helpful or any insight into the relationship with enlarged lymph nodes and the LyP lesions would be great. (I originally got the lesions after taking a warm shower and toweling off - happened the same way last year and this year - I was also really stressed at both times). I'm just ready to feel like my normal 100% self again. I have been sick for six weeks now and it has been a rough process. I'm finally able to be back at work today and I'm so thankful.
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1 Reaction@melissaerobbins Melissa, I hope your doctors are able to solve this for you soon. I know how frustrating it is when your doctors cannot figure out what is wrong with you or what the best way to deal with it is.
JK
Melissa- So sorry for what you are going through. I've had LyP for 17 years now- 9 years diagnosed incorrectly. But mine are much smaller than yours. I use Clobetasol foam (I like it much better than the cream/greasy ointment). It does help a bit. I have definitely been paying attention to my triggers over the past few years- STRESS is a biggie! Hot showers, Jacuzzi tubs- (the spray from the jets on your skin may trigger an outbreak) clothing that is fitted or too tight. I find that I must wear cotton shirts (no silk, polyester, acrylic, etc) or I will have an outbreak. I have given up wearing sweaters unless 100% cotton, or a camisole underneath. I met with one of the top patho-dermatologists in the country (Marshall Kadin MD, Providence, RI) and at that time I had no active lesions. I asked him about whether I needed to see an Oncologist and he said not at this point. There is a 20% greater chance that we will develop Lymphoma than a person without LyP. I have bloodwork done once a year for my LDH level and a chest x-ray. I think you should see an Oncologist and/or Hematologist just to be on the safe side. I'm concerned about your symptoms. There is a group on Facebook for us LyP cheetahs. (We only have 154 members- as they say 1-2 people in a million have LyP) On Facebook, search for Lymphomatoid Papulosis. The members all have LyP and we are there for each other for support and guidance. I hope everything turns out well for you!! Hugs and Prayers! Kathy
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2 ReactionsHi, I'm a 44 year old woman suffering from lymphomatoid papulosis for 10 years now with little or no relief. I got misdiagnosed for 2 years with many scarring biopsies. I went through 10 different dermatologists until they finally found out what I have. My entire body in random places is permanently scarred from this horrible disease. I'm currently unemployed & finally have time to discuss this problem with others who also suffer from this. I'm supposed to be under less stress & now my outbreak is worse than ever. My depression & frustration is worse than ever, too, as I am finally reaching out. My present doctor has had me on methotrexate for the entire 9 years after proper diagnosis. But, the problem is my lesions are now getting bigger & more infectious. I'm desperate for help with this. The depression I'm in is now crippling me from living a normal life. ANY advice would be greatly appreciated right now & am willing to travel to a doctor that can really help me.
Hello, I know this is a rare condition but you sound like my twin. I also was misdiagnosed several times before my confirmation but I was persistent in my search for answers and a cure. I choose to call it my "dis-ease" versus disease. It has been very crippling for me as well and I am on depression meds (seeing a therapist). I was in the clinical trial which consist of an infusion which is now FDA approved Brentuximab. I have tried methotrexate (absolutely did not work, can not believe they have had you on this for 9 years). I have tried Targretin , nitrogen mustard, PUVA and the list goes on. Brentuximab works (infusion is a painful process for me, just being honest) temporarily but stress is a main factor. The condition is stressful so that is an oxymoron. Meditation and long walks help but you have to devote time an energy to it (I still work so the walks are a bit more difficult to get in but I try to make time most days). MD Anderson has the best doctors in the world (personal preference, been seeing them so long that the team is practically family) and the advances in research are extraordinary. I patiently wait for a cure (it is coming but slowly because it is rare and the test populations are small). The sun is a shower of healing in this case (it's like having PUVA treatments for free). I hope this helps. I know this may sound crazy but I'm just glad to see I'm not alone. My family and friends have observed my painful experiences but they don't know what this feels like. Now I see that I'm not alone and we will all get through this together.
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2 ReactionsI'd like to share this spotlight about our Mentor Gail @gailb – https://connect.mayoclinic.org/newsfeed-post/gailb/
I hope you will enjoy reading it and getting to know Gail as much as I have!
Hi all,
I wanted to follow up and share a few resources I found, while researching online:
– https://www.dermnetnz.org/topics/lymphomatoid-papulosis/
– Recent journal article that discusses a severe case of type E variant of LyP which was successfully treated with Interferon-Alfa 2a https://www.hindawi.com/journals/cridm/2017/3194738/
The prognosis of Lymphomatoid Papulosis in most people is excellent, since LyP resolves on its own. On the other hand, since the cause is unknown and it is chronic, it periodically appears and disappears. https://www.dovemed.com/diseases-conditions/lymphomatoid-papulosis/
May I ask members in this discussion to share a bit more? What diet and lifestyle changes have you had to make? How often do have to go for blood tests or skin biopsy to detect any changes?
Does anyone in this group have up to date contact information for Dr. Kadin in Rhode Island? His email & cell # are inaccurate. Or did he retire
He is still listed as practicing at Roger Williams Medical Center (www.rwmc.org) in Providence, RI. The telephone number they have listed for him is 401-456-2100.
Please see my post from April 25, 2018