Systemic Uncontrollable Itching

Posted by acgraves16 @acgraves16, Aug 23, 2017

Hello! I am a 36-year-old female with multiple food allergies and a history of seasonal allergies and Hashimoto's thyroiditis.
Since roughly November, 2016, I started noticing that I would randomly become very itchy. The itching starts at maybe my foot/leg, ears or arms/hands and spread throughout the day to my torso, back and basically any other part of the body you can think of. If I take loratidine OTC 5 mg., this will calm the itching temporarily. Within 48 hours of taking the pill, the itching returns. My allergist originally diagnosed me with dermatographia, but the itching seems to begin regardless of whether or not I have been touched, scraped or bumped by anything. It will occur randomly, as I sit at my desk at work, or watching tv. But it will also occur if I'm exercising. There is usually no rash, except for bumps that come from my harsh scratching response, and I usually bruise myself from scratching so much and so hard. I suppose I could take loratidine every day, but I want to get to the root of what is causing this maddening itch in the first place.
Does this sound like anything anyone has heard of before? This is an entirely new symptom for me, and doesn't seem to have come at the normal time of my seasonal allergies (started in November). Any advice/help is appreciated, so I can bring this concern to my allergist in September.
Thank you!!

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mroreo126 | @mroreo126 | Aug 24, 2017

Hi - My name is Kathy and I am 55 y.o. I had the same symptoms as you do going back about 18 years now. I was misdiagnosed by my PCP, 2 dermatologists and an allergist. They said I was allergic to Bounce fabric softeners, had dermatitis, Folliculitis. I thought maybe I was allergic to the cold weather; as I had many outbreaks during winter. I finally demanded a biopsy when 4 bumps appeared on my left wrist. My PA at my dermatologists' office did the biopsy. The dermopathologist was looking for Epstein-Barr, Mononucleosis. However, they determined I had a very rare skin disease called Lymphomatoid Papulosis. They say 2-3 people in 1 million have it. I believe the rate is much higher- because people get misdiagnosed. In fact- the PA in my Derm's office at the time said she had something similar on her and after my diagnosis came back, she biopsied herself and has the same thing!

There is not a lot of information on the web about Lymphomatoid Papulosis. I know that I have a 20% greater chance of developing Lymphoma than the average person. There is an expert here in Providence RI named Marshall Kadin MD at Roger Williams Medical Center. He has published work on Lymphomatoid Papulosis. It all has to do with the T cells and B cells and immune system. I did see him- although I was asymptomatic at the time. Google him and you should find some answers. I happen to live in Warwick, RI, so that was very convenient.

I will tell you what I have learned my triggers are (took me a lot of years to work on figuring that out!) #1. I only wear cotton now- if I wear polyester shirts, acrylic, wool, etc....I am asking for an outbreak. I usually have flare ups all over my stomach and back. Occasionally my legs, rarely my arms and never (cross fingers) my face. #2. STRESS is a HUGE factor. The more you scratch, the more "bumps" you'll get. You may find that you scratch so hard, they will bleed a bit and scab over and leave little tiny scars. (not noticeable to anyone but you) #3. Hot showers. #4. Do NOT go in a Jacuzzi or hot tub- the spray from the jets brings them right out. In fact you can feel them coming out. #5. Massage or skin to skin friction- This may have been a one time only thing- I went for a professional massage and the masseuse used an oil on me. As she is massaging my back, I can literally feel the bumps popping out on my stomach.

Depending on the severity of the disease determines the treatment. After I realized what my triggers are- I only have a spot here or there now. But, my PA has me use a very strong topical steroid called Clabetasol (sp?) It comes in an ointment form (very greasy) or a foam ( I love). Use it very sparingly.
I have the same bottle that I had a year ago. I also have blood work done and a chest x-ray once a year looking for any lymph node involvement.

Any other questions you have- please feel free to reply! Good luck to you! There is also an email address on yahoo where LyP patients email back and forth. I will get you the name - got to get ready for work. Kathy

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