The disease I have is "Pityriasis Rubra Pilaris" (PRP). Although the first biopsy result said it was "Grover's disease". My second Derm Doc and her colleagues at Johns Hopkins were quite definite in their observations (noting the rash being more extensive than Grover's) that it must be something else and did a another biopsy which established PRP as the disease.
It
first showed up 7/16/13 as a small 4 square inch rash on my chest
which I thought nothing of. Over the succeeding 8 weeks it spread
to all over my chest then to my back, arms and legs. It is
unattractive, itchy and quite frankly alarming. However, there is no
indication that it is fatal other than as a possible indicator of
something worse which I will learn as this journey progresses.
Something worse? Well if I am healthy and feel great so what is this
doing and where did it come from? The cause of this disease appears (however, see below) to
be unknown. I had an urinary track infection, a few weeks
before this (another surprise .. never had that before .. maybe from
walking in the hot weather and not drinking enough water) .. so maybe
it's related to that infection or the antibiotics I took for it. Or to something more scary like cancer.
I now believe the cause of this disease is a problem in the gut as my treatment program directed to cleaning out the gut and restoring it to a health is getting very positive results: reduced coverage of the rash, fading redness, and no itching.
Hi my name is Karen Beetow I have had since I was 17 years old no body gets its it is very frustrating I read your blog and encourages me as well to start my own Im in Rochester NY going through a bad flare up since Janurary nothing working swelling in my ankles started about June not residing very painfull to walk sometimes and to find shoes right now is crazy from what I have read about PRP it has to do with some gene that has to with metablisim that gets messed up between the parents at conseption crazy isnt it but I do believe staying fit and healthy plays a big role in it I havnt been excersing regulary lately almost for about 6 months now which isnt helping but this flare up makes me so tired and almost sometimes feeling like I have flu symptoms . I can go on and on if you want to email me you can directly kbeetow@rochester.rr.com Im a computer all day log at work so being on a computer at night sometimes drives me crazy to but Im making this my hobbie to try and help others with this and become a advocate for this disease. Im so afraid to use the oral meds did acutane when I was little but now there are somany side effects and I have a couple more years to try and have a baby so those drugs are just out of the question right now Im 43 please keep in touch I no you sight now hope this will post
ReplyDeleteHi Karen. Thanks for reading and commenting. I am delighted to hear my Blog is encouraging you. I especially appreciate your comments about the oral meds. I am going all natural and share your views on this. I posted my treatment program today.
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Some of this may be helpful to you. The program is new but I am seeing results. Little or no itching is a great improvement and I think the rash is receding. You can follow my progress daily on my Blog.
Hugh—My name is Bill McCue (PRPer from Plano, TX, onset 08/2012 at age 66, PRP Dx 11/28/2012, Soriatane & Topicals, on the road to remission). Enjoyed reading your blog—especially the letter to the Chairman at Johns Hopkins Department of Dermatology. Two questions: (1) Do you live in Maryland? and (2) When were you actually diagnosed with PRP? I am building a PRP Database and would find the answers to those two questions of value.
ReplyDeleteHi Bill
ReplyDeleteI was diagnosed with PRP in Sept 2013 and yes I live in Baltimore, Maryland. Thanks for your comments and for reading my Blog!
We are so thankful we came across your blog, as my husband has a very advanced case of PRP. He was diagnosed with PRP August 26, 2015 and just started juice fasting on Friday, January 15. He is 72 years young and would like to be able to talk with you via the phone, as his PRP is so severe that he doesn't get on the internet. I have read your blog info many times to him, and he still has some questions, such as "how long did it take for all of your PRP symptoms to go away?" We can't find that info on your blog.
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ReplyDeleteNatural Treatment for Grover’s Disease learns about the Symptoms, Causes and Diagnosis. Natural Herbal Treatment for Grover’s Disease with Herbal Product Graveton Natural Supplement for common itchy rash. The aim of this treatment to cure the Causes of Grover’s Disease.
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