Lymphomatoid Papulosis

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.

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.

Hi, 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.

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

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?