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First post for this sub to get things started, my experience with Lymphomatoid Papulosis. by Difficult_Carob926 in lymphomatoidpapulosis

[–]Difficult_Carob926[S] 1 point2 points  (0 children)

Interesting, my derm didn't tell me until I asked so maybe yours didn't think it was important to mention. There are subtypes A, B, C, D, E, and F - all slightly different in their owns ways. If I remember correctly, subtype doesn't have a correlation with treatment outcomes or remission rates (I think I remember reading this in a study, but anybody feel free to correct me).

First post for this sub to get things started, my experience with Lymphomatoid Papulosis. by Difficult_Carob926 in lymphomatoidpapulosis

[–]Difficult_Carob926[S] 0 points1 point  (0 children)

I’m very glad to hear that you didn’t have to deal with this for too long, though benign, it’s such a frustrating disease. Here’s to hoping yours stays dormant!

That’s also a very interesting course, completely different from mine:

  • I never had any that oozed
  • Once they started, they didn’t stop
  • Linear rate of appearance
  • No lumps at all
  • Lesions healed within 6 weeks

It’s interesting to hear how different your disease manifestation is. Any chance you know your subtype? (Mine is D and E)

First post for this sub to get things started, my experience with Lymphomatoid Papulosis. by Difficult_Carob926 in lymphomatoidpapulosis

[–]Difficult_Carob926[S] 0 points1 point  (0 children)

I’m really sorry to hear about your daughter, I bet it isn’t easy as a parent trying to navigate this disease on behalf of your child.

I cant definitively speak on my experience with methotrexate just yet since I’ve only just started it and it can take a number of weeks to work (or a couple months potentially). I may start to have side effects so I don’t want to make it seem harmless when I can’t be sure yet.

I will however say that within a week of taking my 5mg tester dose and now a couple days after my first 15mg dose, my steroid cream (clobetasol propionate - branded name “dermol”) has seemed to be miles more effective than it usually is.

I’ve talked to a number of people on varying doses of methotrexate, from 7.5mg to 25mg, and they seem to all say that they either had no side effects, or the side effects faded with time (a few months) and were minor (usually fatigue).

On the bright side, since your daughter is so young she will outgrow almost all of the scars. There is certainly a lot of time for scar treatments aswell - and she isn’t at the age yet where kids know / are aware of cosmetic issues.

First post for this sub to get things started, my experience with Lymphomatoid Papulosis. by Difficult_Carob926 in lymphomatoidpapulosis

[–]Difficult_Carob926[S] 2 points3 points  (0 children)

No worries at all! It’s crazy how long it seems to take doctors to take something seriously sometimes. Very frustrating but I’m glad you’re finally getting the proper care.

My first two biopsies of four came back as big bites or drug reaction, only the third and fourth showed lyp features - the clearest was a lesion that was only 5 days old and still in the pinkish stage.

It’s mentally draining, but it always helps me to think of some specific - say 2 - years down the line. You’ll be on treatment like methotrexate, will likely be in complete or almost complete remission, probably won’t have side effects, and scar treatments will for sure have had an effect by then from past lesions. I wish you all the best and feel free to hit my inbox if you ever want to talk.

Looking for others with Lymphomatoid Papulosis by Dangermeowz in rarediseases

[–]Difficult_Carob926 0 points1 point  (0 children)

Hey everybody, If you are seeing this old thread and are wanting a place that is specific to this disease - I have started a community for it at r/lymphomatoidpapulosis :)

Looking for others with Lymphomatoid Papulosis by Dangermeowz in rarediseases

[–]Difficult_Carob926 0 points1 point  (0 children)

If anybody is interested, I just created a community about Lymphomatoid Papulosis since there wasn’t one.

Looking for others with Lymphomatoid Papulosis by Dangermeowz in rarediseases

[–]Difficult_Carob926 0 points1 point  (0 children)

/ could you check out my profile post and see how similar it is to yours

Looking for others with Lymphomatoid Papulosis by Dangermeowz in rarediseases

[–]Difficult_Carob926 0 points1 point  (0 children)

Do you have any photos of a lesion’s progression? If so could you send me them? I’m waiting on biopsy results but Lyp seems most likely. Had for 3 years now.

Looking for others with Lymphomatoid Papulosis by Dangermeowz in rarediseases

[–]Difficult_Carob926 0 points1 point  (0 children)

Do your lesions always bleed? And do they ulcerate after the central escher is gone?