My Whole World

My Whole World

Wednesday, November 14, 2012

Confluent and Reticulated Papillomatosis


 This is what is looks like

I have been officially diagnosed with CRP just this last month, it was between CRP and Darier's Disease but final results came back as Confluent and Reticulated Papillomatosis (or the shorter version CRP). For those who do not know, I have had what started out to be a little rash on the small of my back shortly after I got married in 2006. I could feel it and it would irritate me a little, so went to a doctor and was misdiagnosed and started down the path of so many creams, and so many medicated ointments. Nothing helped. 


Here I am SIX years later and it went from the small of my back to up my back, wrapped around my chest, up my neck into the left side of my scalp and starting to make an appearance on my upper arms. With it growing and becoming increasingly annoying and painful I decided to follow the referrals to a dermatologist that seems to enjoy taking on such a complicated case, and not to mention this man is a genius. I did what needed to be done, many biopsies and many tests. I was put on Accutane for 7 months straight after I had Carson, it seemed to help by not letting it grow or crack and bleed anymore, but then it started to grow at a faster rate, and I became more and more uncomfortable. Now I am started down another road, EXPERIMENTAL TREATMENT. Nothing like being a guinea pig to make things interesting. 

I am on four different treatments, one is efudex which is a type of chemo to treat skin cancer, also oral medication. I will tell you efudex BURNS BAD, and the absolute worse is the clobex spray I apply to the scalp. OH MY WORD! I could cuss and not be ashamed! I have 30 days to see what happens and I am in the first week, so three more to go.

My fear is that it will consume my entire body, for any woman this does not help all the insecurities we seem to have anyway, or getting an infection and becoming septic if this spreads. I came to terms with the ugly possibilities and told my husband, and his response was "we have been through so much already, but there is nothing we cannot get through together." he hugged me, and I cried. I went the longest time not telling people because at one point I was VERY embarrassed but if you know me, that did not last long and I no longer care what others think of my weirdness.

I will try and keep updates on how things go. Nothing like keeping things interesting! I might have to be the first that starts a foundation or something.

15 comments:

Anonymous said...

Oh honey! You and your family's medical luck :(. I'll keep you in my prayers. But never fret, nothing could destroy how beautiful you are, both outside and within. Best of luck dear! <3

Jaimie said...

First: YAY! You blogged! :) But man oh man, you and your family can't catch a break when it comes to hospitals and doctors, eh? I'm so sorry you're having to go through this. I hope that they find a solution/cure sooner than later, so you don't have to keep suffering through it. What a wonderful husband of yours! Glad you have him to lift you up :)

Cara said...

You poor thing. You guys have definitely had more than your fair share of trials that's for sure. It looks like things are moving in the right direction anyway. Your ability to stay upbeat despite the curveballs is so inspiring. You can make it through this and it will all be alright in the end. :)

Anonymous said...

HI, I stumbled upon your blog by accident as I was searching for a lower price on Retin-A Micro cream/gel. When I was 13 I started getting the same rash on my neck, chest and the top part of my back. I have been fortunate that it has never progressed to other parts of my body. Well, I'm 39 now and I still have this condition. Like you, I went through many doctors, not Dermatologist, I was never referred to one, and was prescribed many creams, lotions and home remedies. None ever worked. Then in 2002, when I was in my late 20s' a I notice a coworker had some type of rash in her hands and she was rubbing ointment, I asked her what it was and then I showed her the scaly grayish rash on my neck. She insisted that I go see her Dermatologist, Dr. Jeffrey Karaban, here in Chicago. I was hesitant because up to that moment none of the doctors that I had seen new what I had and why. Well I made the appointment to see him. When I finally saw him he asked me the reason for my visit, as he did this I noticed he was staring at my neck. I pointed to the rash, took of my shirt as to expose my back and chest. Right away he said I think I know what you have, it's not too common and acctually this is the 2nd or 3rd time I have seen this in my 35 year career. He walked over to a book case pulled out a huge 8" book and scrolled through some pages and said, Here! this is what you have! He showed me the pictures, and showed a man with what looked to be the same spots around the same areas. CRP he said, Confluent and Reticulated Papillomatosis or Gougerot-Carteaud Syndrome. I had a smile in my face, this was the first time I saw a picture of what I had and most importantly it had a name. He then proceeded to read some more and he said, here you go Treatment! Minocycline 200 mg a day for 30 days and Retin-A Micro .1% gel/cream apply on affected area at bedtime. I did this for 30 days and since the age of 13 it was gone. Unfortunately this is not a cure, there is no cure, and the reason why it appears is unknown, but it can be controlled. The longest span I have gone through without any trace of CRP on my body was about 7 months. It comes and goes, and sometimes it's worse than others, but I can now take medication that will clear it up. I apologize for the extremely long "comment", but when ever I see someone else with the same skin condition as I, I want to immediately share my experience to let them know that there others out there and they are not alone, and most importantly there is a way to control our CRP. You should definately bring up these medication to your current doctor/dermatologist. Good Luck, DAVID (CHICAGO,IL)

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natalie said...

Hi my name is Natalie, I have had these same patches for ten yrs before going to see a dermatologist.He immediately diagnosed it as CRP.I currently use Zinnat tabs & Retin A.My skin has improved alot but it always comes & goes.Lets keep the faith that someone could find a cure.Good luck!Trinidad in the Caribbean

Anonymous said...

As with some of the other posters I've had my skin disorder since I was around 13 (when I hit puberty) and I'm 24 now. Originally they misdiagnosed me with Tinea Versicolor but I finally went back and my new dermatologist gave me minocycline for a six week trial. It's only two weeks in but my skin has cleared about 75 percent which is mind blowing! If you haven't already started minocycline do it! I haven't had such smooth skin in over a decade.

I am curious though, you say it's painful? My condition has never been painful, only unsightly and scaly. It seems like the others also didn't experience pain so that makes me doubt the diagnosis. My skin scales do not have a border like yours which I find strange. Regardless, good luck!

Rebecca Pierce said...

Hmmmm. Curious if you found relief. I had CRP for twenty years (almost) and other than being unsightly it was never painful or bothersome at all. It went away on its own with each pregnancy and always came back quickly after (I have four kids). I tried Minocycline but it always came back. So a year ago I had acid issues at night and decided to try Doterra (I do not sell it this is not a sales pitch) blend, Digestzen for acid. I bought the pill format because it was easiest and took one at bedtime. Then one day my husband pointed out that my leproacy (as he calls it) was gone. I didn't even notice it leave! It hasn't been back in a whole year. I don't know why it worked or if it would for someone else but I was thrilled!

Anonymous said...

Hi anonymous, your diag could be correct. There are two conditions one is prurigo pigmentosa which is same family but with inflammation other is painless that's carp. That said, iihave it since teen and i am in late 30s. This condition just went away when I have tried everything unfortunately mino doesnt suit me I am immune to tetracyine. Anyway I experimented so many things, I was even on milk only with very little carb from fruit for 2 weeks.they were gone in 2 weeks but returned as i started to eat again for survival. How can some one live on that being a vegetarian it was hard so i had to return back to wheat. But think it like a bacteria and fungus in intestines...any candida like diet helps a lot. Eat cake cheese or proccessed white things and you see them everywhere. Also the silver white spots are so impossible
to hide even with foundation they shine through. Anyway antibiotics does lnt suit me so i am following ayurvedic path...that's a permanent solution.

Anonymous said...

@ Rebecca how much time it took to go away. will try this out...currently I am trying caprylic acid with oregano oil. (I don't drink too much water) but it is helping in improving over all glow not sure about condition. its my second week.

Unknown said...

Minocycline followed by lemon cure for detox and black seed oil for maintenance take it every day. Is gone now for 12 years.

Unknown said...

Lemon with black seed?

Unknown said...

After the antibiotic. Do the lemon detox. After the detox with lemons you need to use blackseed oil for maintenance two teaspoons daily. It worked for me.

Unknown said...

I have it too. It was dormant until recently - 70% rubbing alcohol HELPS CLEAN it up visually. It wipes off and looks a little less visible - it becomes smooth so it's easier to cover up if that's what you're trying to do.

I have a feeling a vegan diet would help. Are any of you vegans?

I may return to my dermatologist and ask for more meds. I tried MANY things about 9 years ago, so I'm not really sure which was the one that helped - or if it was a combination of everything. It wasn't entirely gone, but it rarely "came back" and when it did it would quickly get better.

I would love an update! Let's keep this going guys - it's sad to see information and the no replies for years. Maybe we should start a group!! :D

Anonymous said...

My daughter has this and is taking Minocycline and it seems to help while she takes it but it comes right back after she is off of the medication. It showed up for the first time last summer when she was 12 years old - it was all over her back, under her armpits, neck and chest. The dermatologist initially thought it was a fungal infection but when medicine didn't work he did a biopsy and sure enough it is CRP. It cleared up everywhere after the antibiotic but I just had to put her back on it because it is showing up on her neck again.