Lymphomatoid Papulosis

Posted by mroreo126 @mroreo126, 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

Liked by mettemaj

@melissaerobbins

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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What us LyP? I've never heard of it. I know 6 weeks can seem like forever, especially if you're young, have children, and a job.
What is the stuff coming out of the lesions that looks a brown color? Have they told you?

I started a new group under Skin Problems called Morgellons and Other Parasites, if you know of anyone suffering from parasite problems. What people don't know, is that you usually cannot see them unless you have either a violent/blue light or just a phone camera that has a high MP count (mine is 12 MP) but the important thing is ALWAYS USE THE FLASH. Otherwise, you can't see a thing.

Good luck with yours. Don't you just hate it when you have something and can't figure it out?

God bless.

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Not sure where to post a new subject but, I have a question. I have LyP and also nerve problems. I've been advised to get a shingles shot asap. I'm worried about setting off the LyP even worse. A few weeks ago I had a bad allergic reaction to soemthing and the LyP flares up more now. Also, I'm under 60, so shingles shot not covered by insurance. Has anyone had any experience with getting shingles shot before age 60 and having it covered because of LyP diagnosis? Also, any bad LyP reactions to shingles shots? I reallly appreciate your responses.

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@jgsounds

Not sure where to post a new subject but, I have a question. I have LyP and also nerve problems. I've been advised to get a shingles shot asap. I'm worried about setting off the LyP even worse. A few weeks ago I had a bad allergic reaction to soemthing and the LyP flares up more now. Also, I'm under 60, so shingles shot not covered by insurance. Has anyone had any experience with getting shingles shot before age 60 and having it covered because of LyP diagnosis? Also, any bad LyP reactions to shingles shots? I reallly appreciate your responses.

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Hi @jgsounds it must be frustrating have more flares up since that allergic reaction.
Since your doctor is suggesting you get a shingles vaccine, you may find these threads to be helpful.

– Shingles
https://connect.mayoclinic.org/discussion/shingles-3/
– Postherpetic Neuralgia (Shingles) nerve damage around eye, eyebrow, forehead & scalp
https://connect.mayoclinic.org/discussion/postherpetic-neuralgia-shingles-nerve-damage-around-eye-eyebrow-forehead-scalp-8/

I'd also like to introduce @mroreo126 and @2011panc as they may be of some help.

@jgsounds could I ask about the nerve problems you mentioned? Do they affect your LyP at all or are they two separate issues?

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@jgsounds

Not sure where to post a new subject but, I have a question. I have LyP and also nerve problems. I've been advised to get a shingles shot asap. I'm worried about setting off the LyP even worse. A few weeks ago I had a bad allergic reaction to soemthing and the LyP flares up more now. Also, I'm under 60, so shingles shot not covered by insurance. Has anyone had any experience with getting shingles shot before age 60 and having it covered because of LyP diagnosis? Also, any bad LyP reactions to shingles shots? I reallly appreciate your responses.

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@jgsounds I have neuropathy secondary to long term Type I diabetes. I do not have LyP, which I understand to be Lymphomatoid paplulosis. I cannot take the Shingles vaccine because I have an organ transplant. I suggest you discuss this with your physicians to get the best information. I am sorry, I have nothing for you.

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@ethanmcconkey

Hi @jgsounds it must be frustrating have more flares up since that allergic reaction.
Since your doctor is suggesting you get a shingles vaccine, you may find these threads to be helpful.

– Shingles
https://connect.mayoclinic.org/discussion/shingles-3/
– Postherpetic Neuralgia (Shingles) nerve damage around eye, eyebrow, forehead & scalp
https://connect.mayoclinic.org/discussion/postherpetic-neuralgia-shingles-nerve-damage-around-eye-eyebrow-forehead-scalp-8/

I'd also like to introduce @mroreo126 and @2011panc as they may be of some help.

@jgsounds could I ask about the nerve problems you mentioned? Do they affect your LyP at all or are they two separate issues?

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Yes, separate issues. I have had problems with nerve pain, neuralgia, and repetitive stress injury for decades. But the idea of postherpetic neuralgia from shingles frightens me. Not to mention it may bring on more LyP flare-ups because of the overall stress to the body.

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Hi im samantha and im only 16 and got diagnosed with lyp in the end of June. And because I live in such a small town my doctor had never seen anything like this before. which made it where I spent my whole June in the docotors getting my blood taken every week and getting a biopsy etc. Which then lead to half of my sores healing and scaring (very ugly) and more were showing up all the time and still are. My doctor sent me to a dermatologist and im her first case of lyp which is frustrating because she has no clue what she is doing but my current treatment is shots directly into my sores which is very painful. Also I have to drive 2 and half hours to get to my derms office which is very difficult because im in school. Then three weeks ago we found two lumps in my lymph nodes down by my groin and they refused to remove them until I waited a month to see what was going on with them. That is very hard because I walk all day at school and they cause a very painful stabbing pain when I walk and sit. And my parents dont understand because they dont have it and ive tried explaining to them but they dont seem to care.

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Hi @samanthabryant. Welcome to Connect! Your struggles to get diagnosed sound awful, as do your current struggles walking at school due to the lumps in your lymph nodes.

I'm confident @mroreo126 and @jgsounds can sympathize with your struggles to fight LyP and offer support.

Have you been able to get the lumps removed yet? Or are you still waiting?

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@ethanmcconkey

Hi @samanthabryant. Welcome to Connect! Your struggles to get diagnosed sound awful, as do your current struggles walking at school due to the lumps in your lymph nodes.

I'm confident @mroreo126 and @jgsounds can sympathize with your struggles to fight LyP and offer support.

Have you been able to get the lumps removed yet? Or are you still waiting?

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Im still waiting i have surgery this week to get them removed to check for cancer.

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@samanthabryant

Im still waiting i have surgery this week to get them removed to check for cancer.

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Samantha, I'm so sorry to hear of your struggles. I'm also having sores right now, that make it difficult to type actually. I see a new dermatologist tomorrow and hoping to get some relief as the sores are painful. But like you say, most derms haven't had any experience with LyP and so I've had some fairly bad experiences with one lately who couldn't even handle doing a biopsy. He dropped it on the floor. And had to do the hands which is never good, so I will have more scars on hands. (The new sore are mainly on the hands, too.) Let us know if and when you have the surgery and how you are doing. I'm with you in support. Must be so difficult to be a student and deal with all this, but I'm rooting for you!

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Any advice for a severely infected LyP lesion? I have been on methotrexate for 9 years now & it has stopped working completely. I have tried clobetasol cream, sunshine, less stress. Also, eliminated sugar, alcohol, gluten, & dairy from my diet & nothing has worked. Any topical cream recommendations. The sore is extremely painful & getting larger & oozing. I'm on my tenth dermatologist & he has no idea what to do for me. Please help. I'm desperate & in pain.

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@04021974

Any advice for a severely infected LyP lesion? I have been on methotrexate for 9 years now & it has stopped working completely. I have tried clobetasol cream, sunshine, less stress. Also, eliminated sugar, alcohol, gluten, & dairy from my diet & nothing has worked. Any topical cream recommendations. The sore is extremely painful & getting larger & oozing. I'm on my tenth dermatologist & he has no idea what to do for me. Please help. I'm desperate & in pain.

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@04021974 @samanthabryant

Has anyone talked about trying hyperbaric chamber sessions to help heal your lesions? I don't know if it's possible or if it would help, but it does work for sores that don't heal due to diabetes. My chiropractor even has a hyperbaric chamber. You may want to check with your doctors to see about this treatment. Also, you might want to see an oncologist rather than just a dermatologist. I don't have LyP, and I'm so sorry to hear about your struggles and pain with it. I hope you find relief soon.

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@gailb

@04021974 @samanthabryant

Has anyone talked about trying hyperbaric chamber sessions to help heal your lesions? I don't know if it's possible or if it would help, but it does work for sores that don't heal due to diabetes. My chiropractor even has a hyperbaric chamber. You may want to check with your doctors to see about this treatment. Also, you might want to see an oncologist rather than just a dermatologist. I don't have LyP, and I'm so sorry to hear about your struggles and pain with it. I hope you find relief soon.

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Hi. New to this group. Diagnosed February 2017…a quick diagnosis so feel I’ve been lucky compared to others on here. On Methotrexate and under Dr Whittaker at Guys Hospital, London. Sores quite large and breakouts regular and very sore. Main issue is sickness caused by meds. So pleased to have found this group, especially as LyP is so rare. Best wishes from the UK

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@samanthabryant

Im still waiting i have surgery this week to get them removed to check for cancer.

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Hi Samantha- I'm so sorry for all you are going through at such a young age. Have you had your surgery yet? Have they given you a diagnosis? I was misdiagnosed for 9 years before demanding a biopsy and got the LyP diagnosis. Right now I have about 10 small lesions on me. If they get itchy I have Clobetasol foam (like it better than the cream- it's greasy and more like ointment) to put on them. When I did not know what they were- I would continue to scratch them- which made more come out. So, I think I am doing well. You have quite a bit going on; where I don't even know what to give you for advice. I hope your diagnosis was a good one, and prognosis as well. I believe more people have LyP -and that it is not so rare (they say 1-2 people in a million). I believe people just get misdiagnosed and are dismissed by their doctors. When my PA in my dermatologist office biopsied me and got the results- she shared with me that she had the same looking papules on her and the DERM dismissed her with dermatitis. She biopsied herself and learned that SHE has LyP. I saw her yesterday because I have also had Basal Cell, Squamous Cell & Melanoma in-situ (Skin Cancer) and have a full body exam twice/yr. I also have bloodwork and Chest Xray annually. My PA told me that her 1st cousin (female) just got diagnosed with LyP. There is a private group of us on Facebook that have LyP with 206 members. I think you should request to join- many of the members have a lot more going on than me and can hopefully give you some good information. I hope your parents are being a lot more supportive. You need someone to advocate for you. What state are you in? Check out http://www.facebook.com/groups/lymphomatoidpapulosis. Good luck and keep us posted!! Kathy in Rhode Island

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@ajpicknell

Hi. New to this group. Diagnosed February 2017…a quick diagnosis so feel I’ve been lucky compared to others on here. On Methotrexate and under Dr Whittaker at Guys Hospital, London. Sores quite large and breakouts regular and very sore. Main issue is sickness caused by meds. So pleased to have found this group, especially as LyP is so rare. Best wishes from the UK

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Hi @ajpicknell and welcome to Connect! It’s great to hear that you were diagnosed quickly and that you have joined the group. However, it’s unfortunate that the medicine is causing you to get sick.

@04021974 took methotrexate and may have advice as to how to handle side affects.

@ajpicknell what kind of sickness or side effects are the meds causing for you?

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I have had this disease for over 30 years. I will be 65 in two months. At first I was told my days were numbered. Yet I'm still here. Then I was told it was MF.. mycosis Fungoides. A couple of years ago they decided it was LyP. Not sure what I believe

Unlike many of you i have had many biopsies over the years. either inconclusive or cancer. Yet again here i am over 30 years later.

I can be clear for months. Sometimes barely anything some years. Then there are the bad years and I have the scars and the stained skin to prove it.

I get bumps on my back and all over my front and arms. They are sometimes itchy and occasionally painful when scratched by accident. However it is my legs that get the brunt of this disease. That's where I get the reddest rashes and bubbly bumps that itch all day.

I always debate whether to use the steroid cream that stains my legs forever or suffer. Right now I'm using the cream. A medieval steroid rather than the strongest.

I avoid shorts or swimming when I have the outbreak s. Tired of the questions all these years.

I use ice on the area that is itchy.. I also keep the steroid cream in the refrigerator and it helps with the itch.

I was told years ago not to use sunscreen on arms and legs to prevent the bumps. Frankly I have no idea if it works.

I just had an unusual situation in my arm. I had a non latex bandage on and it caused quite an eruption. It was changed daily. Four weeks of steroid cream calmed it down but I believe it is stained forever

I don't believe that a bit shower or massage has caused eruptions but don't know for sure.

Stress. I was told stress has an impact. My only take on that is that I can't tell. I will have a stress period then no stress for a long time and get an outbreak in the no stress time. I have suspected for a long time that the rashes and bumps have a delayed reaction it can be even months later.

Does anyone else know they are coming before they appear? My skin starts feeling taut and I just know they are coming.

I wish you all well with this. I'm sitting here itchy like crazy. Need my cold pack. Please keep up the discussion we can try to help each other.

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