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DiscussionAnyone have Cutaneous T Cell Lymphoma?
Blood Cancers & Disorders | Last Active: Jul 9 8:01pm | Replies (175)Comment receiving replies
Replies to "Hello all.... I still have no firm diagnosis for my ongoing skin rash but thought I'd..."
Hello- I know I'm 2+ years after your posting this, but I have a rare skin disease called Lymphomatoid Papulosis. I have had it for almost twenty years, but was misdiagnosed for 9 years. Finally I demanded my derm do a biopsy and it came back as LyP (abbrev). They say 1-2 people in a million have it, but I think people are just getting misdiagnosed. I have learned what my triggers are and can say right now I am in remission. I would have red bumps or papules on my stomach, abdomen and back. Occasionally a few would pop up on my arms or legs. They were SOOOOO itchy! I would scratch where they would bleed a bit, scab over and leave a tiny scar. When I was finally diagnosed with it- they knew so little about it- there were no "types". Now, after a lot of research, I believe I am type A. There is a facebook page for it if anyone thinks they may have it. Before my definitive diagnosis, I was told I had dermatitis, allergy to Bounce fabric softeners, Folliculitis. I know my triggers- Stress is the biggest. I wear cotton clothes only- nylon, poly, silk, rayon- forget it! A jacuzzi tub with the jets of water spraying directly on my back- outbreak. My last back massage- felt great, but as I was getting it I could feel the bumps begin to erupt on my stomach- sure enough there they were afterwards! So- I attribute that to either the oil she was using - but I think it was the direct constant friction of skin to skin contact. When I have outbreaks I use Clobetasol foam (the cream is like ointment-very greasy). Some people have other types (B-F) and have it much worse than I do. They say people with LyP have a 20% greater chance of developing Lymphoma. For now- I am good, and no outbreaks! Good luck to all!
Hi cindylb, I saw your post today...im new here and have MGUS. The one thing I can relate to you, is I also experience awful itchy rashes. I was referred to Mayo in 2014 since my local derm suspected something medical brewing. At that time my rashes were wide spread, tormenting itchy, day and night. Some days I just scratched, and cried. It started on the back of my head near the base, then popped up anywhere. I had 6 skin biopsies, with no sure diagnosis. The derm in mayo did say sometimes they don't get a clear picture until they get closer. Then last year, I was told I have a low case mgus. Dr doesn't say rash is connected, but just don't know anymore. Over the years I have switched and tried everything from diet, to laundry detergent, my environment, personal toiletries, etc etc. I also had an enlarged lymph node removed from my groin in 2014, after i had become very sick with low grade fever, excruciating flank pain, and rapid weight loss, lymphoma was suspected, but tested negative. No further explanations. I gradually got better within 8 weeks. I still experience ITCHY rashes, just maddening, but not nearly as severe...just pops up occasionally. I use a prescription cream which helps. All I can say to you, is keep seeking help, and switch drs if your not comfortable. I hope you get treatment asap. I'm not sure if you said you were diagnosed with lymphoma, or still getting tests?? Either way, I feel for you, and hope you find relief for those AWFUL rashes!!
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