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

HI @lindal89 and welcome to Connect! Thank you for sharing your story. It must be frustrating having limited control over outbreaks, and disconcerting being able to feel they are coming.

@mroreo126 @jgsounds and @samanthabryant all have lymphomatoid papulosis and can sympathize with you and may be able to provide support.

@lindal89 You mentioned how a couple of years ago, they switched your diagnosis from mycosis fungoides to lymphomatiod papulosis. Do you know what led them to change their diagnosis You mentioned how a couple of years ago, they switched your diagnosis from mycosis fungoides to lymphomatiod papulosis. Do you know what led them to change their diagnosis?

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Hi Ethan, That is a good question. My doctors from 1988 till a couple years ago did frequent biopsy's and the prevailing thought from the UCLA and USC doctors was that it was on the line but the markers seemed to indicate the Mycosis Fungoides for many of the lesions. Some lesions were benign. That is what I operated on for all those years. I changed dermatologists due to a move and this one did not believe it was MF. They took another biopsy in August of this year and the diagnosis was not MF. It was LyP. The change in diagnosis was important, but I tried over the years to not let the diagnosis define me and try to live my life. I travel all over the world and try to not let the outbreaks stop me, but I do realize that many people on this chain have more serious outbreaks and cannot do what I do.

The ice pack on the outbreak that was recently recommended by a doctor and putting the steroid cream in the refrigerator has really helped (but not totally) with the itching.

Even after just about 30 years I really can't figure out why they show up. I look forward to reading these posts and seeing if we can help each other cope with them. Thank you for your reply.

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Hi,
I just found this thread and was wondering if you all could give me some insight. I was diagnosed with ALCL in 2017 and then upon further review they said I actually probably have LyP. That's been the primary diagnosis ever since. Recently, my husband and I have been trying to conceive and have had no luck. I've been to my OBGYN and was told that they weren't really sure if it was a good idea because they had never treated a person with LyP before, and they are worried pregnancy would just make it worse. Has anyone on here gotten pregnant with LyP? If so, did it affect your LyP at all? Any information or insight would be appreciated. Thank you all so much!

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Hello my name is Danielle! I jus found out I was diagnosed with Lymphomatoid Papulosis maybe 3 months ago. I thought it came from a dog I had that was sick but my doctor says not. I’ve been on this medicine called Methotrexate which some people heard about for almost 3 months. I haven’t seen any progress taking the medicine more spots have showed up lots at a time and the symptoms are not getting better. Also the ointment isn’t working eithter. At this point I don’t know what to do. Should I change doctors or what should I do about this??? Any suggestions or ideas of what I should take?

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Hi @shewinning and welcome to Connect. It must be frustrating that you are unable to find relieve with your current medication.

@lindal89 @mroreo126 @jgsounds and @samanthabryant all have lymphomatoid papulosis and can sympathize with you and may be able to provide support.

Back to you, have you brought your concerns up to your doctor? What have they said?

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Hi Danielle- I'm so sorry that you 've joined our LyP club. Did the dermatologist do a biopsy. Do you have a really bad case of it. Methotrexate is a chemo drug and certainly wouldn't be my starting choice. Are you in the United States? I would definitely get a 2nd opinion. You didn't say how old you are. I am 56 now and misdiagnosed for 9 years because they didn't do a biopsy. Did they tell you what stage you have? I think I have Type a, but back then they didn't have stages. Some people get it worse than others. 3 recommendations – definitely get another opinion. I use Clobetasol when they itch. I have been in remission for a bit. I know what my triggers are. There is a group on Facebook called Lymphomatoid Papulosis- join the group. Everyone supports one another- it's really great. Some people take it in stride- you still have to live you life. Others flip out especially if their children get diagnosed. You can always post here as well on Mayo's site. See you on FB. Good luck! Kathy

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Since I wrote at the end of last year, I have had a pretty severe outbreak on both thighs and around knees. It coincided with a severe cold I had for 2 weeks,
The doctor put me on Betamethasone Dipropionate Ointment 0.05%. It's strong so I'm told I can only use it 14 days a month. Twice a day. It worked on my lesions last month, just started on it after 14 days off of it for the new lesions. The Triamcinolone Acetonide Cream USP 0.1% did not work on the new lesions.

It is discouraging since I haven't had a big outbreak in a few years. Most times I can ignore the fact that I have this but for the occasional few lesions here and there.

I really try not to think about it developing into Lymphoma. Since that was what I was originally diagnosed with and turned out not to be I was relieved and choose to stay that way. My husband had prostate cancer 14 years ago and miraculously with the help of medication kept cancer at bay for all those years. We didn't obsess over the cancer and had a wonderful life traveling all over the world. It did come back with a vengance and he passed away, but I am glad we had all those years not thinking about it as there was nothing we could do about the situation anyway.

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@mroreo126

Hi Danielle- I'm so sorry that you 've joined our LyP club. Did the dermatologist do a biopsy. Do you have a really bad case of it. Methotrexate is a chemo drug and certainly wouldn't be my starting choice. Are you in the United States? I would definitely get a 2nd opinion. You didn't say how old you are. I am 56 now and misdiagnosed for 9 years because they didn't do a biopsy. Did they tell you what stage you have? I think I have Type a, but back then they didn't have stages. Some people get it worse than others. 3 recommendations – definitely get another opinion. I use Clobetasol when they itch. I have been in remission for a bit. I know what my triggers are. There is a group on Facebook called Lymphomatoid Papulosis- join the group. Everyone supports one another- it's really great. Some people take it in stride- you still have to live you life. Others flip out especially if their children get diagnosed. You can always post here as well on Mayo's site. See you on FB. Good luck! Kathy

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Hey Kathy thanks for the support but yes I’ve brought the issue up to my doctor and it’s really nothing he can do I want a different medicine or cream or ointment that’s gonna help me because this is very frustrating for me now that the spots are on my face. Do you have any suggestions on medicines or ointments that might help??? That would be really helpful then I can tell my doctor about them.

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@shewinning

Hey Kathy thanks for the support but yes I’ve brought the issue up to my doctor and it’s really nothing he can do I want a different medicine or cream or ointment that’s gonna help me because this is very frustrating for me now that the spots are on my face. Do you have any suggestions on medicines or ointments that might help??? That would be really helpful then I can tell my doctor about them.

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And I’m at stage a as well

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@shewinning

Hello my name is Danielle! I jus found out I was diagnosed with Lymphomatoid Papulosis maybe 3 months ago. I thought it came from a dog I had that was sick but my doctor says not. I’ve been on this medicine called Methotrexate which some people heard about for almost 3 months. I haven’t seen any progress taking the medicine more spots have showed up lots at a time and the symptoms are not getting better. Also the ointment isn’t working eithter. At this point I don’t know what to do. Should I change doctors or what should I do about this??? Any suggestions or ideas of what I should take?

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Hi Danielle. I’m on Methotrexate as well and it is controlling my outbreaks at the moment. Perhaps you need a higher dose? They tend to start you on a lower dose and increase this until the breakouts subside. Although there is no cure and the methotrexate cannot stop outbreaks completely on the correct dose for you it should make them less severe. I have however seen mixed reviews about the drug so I’m guessing it doesn’t suit everyone.

Liked by shewinning

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@ajpicknell

Hi Danielle. I’m on Methotrexate as well and it is controlling my outbreaks at the moment. Perhaps you need a higher dose? They tend to start you on a lower dose and increase this until the breakouts subside. Although there is no cure and the methotrexate cannot stop outbreaks completely on the correct dose for you it should make them less severe. I have however seen mixed reviews about the drug so I’m guessing it doesn’t suit everyone.

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My doctor suppose to be putting me on a higher dose hopefully it works but as of now it isn’t I jus want a second opinion on it and a different type of medicine or ointment to use for it’s ? Do you know any other medicines that might help???

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Hello all about 2 weeks ago I finally got the diagnosis of LyP. My rash developed sometime last spring as a coin sized annoying patch behind my neck. After trying to get rid of it with hydrocortisone, it spread and became a grapefruit sized patch of itchy bumps by November. Two biopsies later, I got the diagnosis.

By this time my whole chest, lower back, hands, neck and ears were covered by these randomly appearing horribly itchy bumps. Many anxious nights were spent trying to research it and unable to sleep bc of the unrelenting itch.
Heres the thing. I'm convinced its caused by my hair dye! This is the very first thing I told my dermatologist but he said reactions usually occur immediately. Not true.

I often wear hair clipins and weave. I also use permanent jet black dye on it a LOT. Like once every 2 months. The darker the dye the higher the toxic chemical % of PPD which most dyes use.

I took the hair out for a week and NO reaction. Put it back and immediately the itching bumps and a hot sensation returns to everything the weave touches. I did a little research and found a hair dye allergy support group for other women with the same rash and other sudden systemic issues that popped up after dyeing for 20 plus years. Now I'm putting the puzzle together. The bumps only appear on the areas my (fake) hair drips down my body. Long story short, I will use henna from now on and trust my instincts.

To all out there suffering, Epsom salt baths and clobetasol (without citric acid pls check the ingredients) helped me. I'm also using several supplements to detox as well as the sauna. As for the spots, I'm using 3 creams to fade them.

Watch for environmental toxins. They can and will cause a reaction after long term use for some of us.

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@shewinning

Hello my name is Danielle! I jus found out I was diagnosed with Lymphomatoid Papulosis maybe 3 months ago. I thought it came from a dog I had that was sick but my doctor says not. I’ve been on this medicine called Methotrexate which some people heard about for almost 3 months. I haven’t seen any progress taking the medicine more spots have showed up lots at a time and the symptoms are not getting better. Also the ointment isn’t working eithter. At this point I don’t know what to do. Should I change doctors or what should I do about this??? Any suggestions or ideas of what I should take?

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Hi, do you know which ointment you were given? I got Clobetasol but they are made with different fillers depending on the manufacturer. Make sure it has no citric acid, as that could irritate ppl with already inflamed skin. Also try a warm (not hot) Epsom salt bath. That dried my rash up quickly.

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Just wanted to say hi to all and to thank you for this group. It’s so important to not feel alone and as if you are the only one, especially as we are all ‘one in a million’ apparently. It’s Easter weekend here in the UK and we have sun! Which is a bonus. Thinking of you all xxxx

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@shewinning

My doctor suppose to be putting me on a higher dose hopefully it works but as of now it isn’t I jus want a second opinion on it and a different type of medicine or ointment to use for it’s ? Do you know any other medicines that might help???

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Sorry for delay in replying. I’m afraid I don’t know about other medications available and none have been mentioned to me. I was told light therapy can be used in some cases but I haven’t had that xxx

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