Just Diagnosed With Lymphomatoid Papulosis :(

Hello my name is Corina, I am 26 and was recently diagnosed with Lymphomatoid Papulosis. It has been a horrible couple of months of doctors trying to figure out what it was. What we thought was a bug bite I received while in St. Marteen turned out to be this disease. It was scary waiting to find out if it was cancerous or not but thank the lord it is not (for now).  I am so confused on what treatments to do. My husband and I were going to start trying to conceive until we found out about my LYP. I just don't think I want to start some of the more harsh treatments until after we have a baby. Has anyone been pregnant with disease? I did decide to try Doxycycline and have been on it for the last month with little results. Next they want to try methotrexate but I want to get some feedback from others on what their experience was with this drug. Or PUVA? I still think we will hold off with any  more meds until after I have a baby but would really appreciate anyones input. It has been one of the hardest things I  have ever had to deal with.  It started with one bump on my arm about 4 months ago and has now spread,  to my neck, back,stomach,legs and recently my FACE!  I'm glad to have found this wesite and to read your stories. Please, I would like as much info and feedback as possible so that we may get a handle on this horrible disease. I have a great dermatoligist but I am also looking into maybe seeing a holistic doctor to see if they have any input.

corinap corinap
26-30, F
7 Responses Feb 21, 2010

Hello. I am in Arkansas and was recently diagnosed with Lymphomatoid papulosis. I have many lesion's. They itch horribly and are embarrassing when they heal and leave scars. Since this is rare no one knows much. I am single and too embarrassed to get in a relationship with anyone because of the ugliness of the outbreaks under my breast and inner thighs. So ready for someone to find a cure. Anyone have any suggestions to clear up the scars and what topical creams or ointments work better than others?

I was diagnosed with LyP when i was twelve, my treatment was light therapy and it did more to reduce the lesions than any cream did. The only downside to this is the cost and for some strange reason I can't tan anymore, but i guess that is ok since a tan is damaged skin cells. I hope this helps you and I wish you the best.<br />
-Allie Ann

Hello,<br />
<br />
Good, that we can have babies :):)<br />
Wish all the best :):)

Oh that is so good to hear, yes thank you so much that does put my mind to rest a bit!!!!! I am currently not on any meds and have been doing light treatments and it has been helping.I hope we can get pregnant within the next couple of months and that makes me happy that I may not have to stress so much over my bumps while pregnant. Thank you again for sharing this with me. Take care.<br />
Corina

Hi there, Just to put your mind at rest, I have had 3 healthy children while having LYP.None of them have this either.<br />
In fact while I was pregnant alot of my spots,sores calmed down.<br />
I wish you good luck.<br />
Paula.

Hi Foleparks,<br />
<br />
That is so great to hear!! I can't wait for the day that mine is better. I'm still on Doxycycline and that has actually sort of been helping. I still have bumps but they seen to be less and less. Thanks for the information, take care keep in touch.

I was also diagnosed with this crazy disease at about the same age as you, I am now 28. I went with the PUVA treatment, it took time for my skin to clear up (I was probably on treatment for a year)...but, it did work! I have almost been off treatment for a year and haven't had any outbreaks. Talk with your Dr and see what he/she reccomends as far as starting a family. Best of luck.