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View Full Version : New here...story to tell and questions that need answered!


sumx4182
07-31-2006, 12:11 AM
Hey all. My name is Chris, I'm a 20 year old college student from the University of Akron. I was diagnosed with psoriasis shortly after birth. I was covered over 80% of my body. I'm actually in a medical book at a Pittsburgh hospital because my case is documented as being one of the worst cases of infantile psoriasis that the hospital has seen. Anyways, I'm lucky now that my psoriasis has increasingly decreased as I've aged. When I was around 7 or 8, my psoriasis was limited to under my arms, my scalp, elbows, and where my leg meets my groin. As I've gotten older, my psoriasis has changed to being on my scalp and on my face (around my nose, in my sideburn area, and a small patch above my right eyebrow). Far and away, the psoriasis on my scalp is the worst. I itch all day. It's hard to wear dark clothing...well, you all know the drill. In my lifetime, we've spent a ROUGH estimate of over 10,000 dollars on prescriptions, skin doctors, over the counter treatments, shampoos...the whole nine. We don't have a real dollar amount, be we know it's over 10g's considering I saw a skin doctor bi-weekly for more than 5 years.

Recently, I've all but given up on prescription drugs, psoriasis/dandruff shampoos and creames. I've grown to accept my psoriasis as an inevitability rather than something that I can change. Maybe this isn't the best thing to do, but I guess I'm tired of blowing money on crap that doesn't work. I've started taking fish oil supplements, partly because of their rumored psoriasis effectiveness and partially for the heart benefits (bad family history). I've noticed that my spots on my face seem to be thinner, less built up than normal. If I stop taking them for a few days, they get thick and dry again. None-the-less, they haven't completely gone away and the scalp remains as strong as ever...

Luckily, I've found a the perfect girl who helps me with all of my psoriasis problems. She's the first person who never really criticized me or had anything negative to say. Hell, I, like many people here probably, was always teased as being "dirty" and stuff like that because people thought I had dandruff. But she's extremely supportive and I'm lucky to have her in my life. We're engaged to be married in a few years and she never hesitates to put some cremes on my scalp or wash and massage my hair. I consider myself truly lucky to have found someone so understanding.

But on to my questions! My mom (a nurse), and about 5 other people, have kept telling me about the Listerine treatment for psoriasis, and I'm considering trying it to see if it works. I figure it's a cheap thing to do. But I don't hold out much hope for improvement. Has anyone had ANY benefit from this? I hate getting my hopes up over and over again just to be let down! lol.

Also, does anyone know if there is any credible active research going on for a cure to this condition? I mean, I know we're not up on the list with cancer and AIDS, but it would be nice to know there might be a chance of a cure in my lifetime. I, like many people, would be SO happy to experience just one day without an itch, a funny look when there's red marks on my face, or having to dust flakes of my suit jacket. In fact, if I had only one wish, you could all guess what it would be. I guess I'm just curious as to new research going on because since I've not known a single day without it, I'm hoping that one day in the future, there might be that day that I've prayed for from time to time.

Sorry for being so long winded. This is my first psoriasis board. I've told my story to many people. And I never hesitate explaining my condition to curious people, as long as they are taking the time to know what's wrong with me, rather than making fun of it. I've even given a college speech about my condition to educate people in my class. I hope others do the same, and maybe, if my kids have the unfortunate task of dealing with this condition, the world might be a little more knowledgeable about it and they won't have to go through what many of us have gone through. Thanks for reading. Feel free to answer my questions or just provide a general reply. I look forward to hearing from you all and though I'd love to be around here for awhile, I'm hoping that at some point, we'll have no need for a forum like this!


Chris Campbell, aKa Sumx4182

mamaooch
07-31-2006, 04:28 AM
Chris,
Hello and welcome to the boards. I am 44 and have severe PA and mild pppp. I can't help you with your question, but someone will come along and help you find the answers that you need. You have a very positive attitude.

Have a great day!
Cindy

Geffy
07-31-2006, 08:39 AM
Hi Chris,

I always wanted to try motor oil, but boy would I stink! I have never heard of Listerene being used, but maybe someone has. I would be willing to try the Listerene on a spot as I don't see what harm it could do me. I would think it would dry out the P even more though and I can understand the disappointment. I am 34 and I have mild to moderate P and PA.

I am happy you have a good outlook and have such a great person to share your life with. :)

Welcome to the boards

evergreen
07-31-2006, 08:57 AM
Hey Chris! Olux has worked pretty good for P on my scalp...don't know where you stand on some of the other meds, like MTX and Humira, but they are working wonders for me, especially with the PA that I have.

Take care~

GitOverIt
07-31-2006, 09:03 AM
For those interested in Listerine treatment ....here is one explanation for scalp P



http://64.233.161.104/search?q=cache:kM-1XzqFoNkJ:www.healthcentral.com/peoplespharmacy/408/61198_2.html+listerine+treatment+psoriasis&hl=en&gl=us&ct=clnk&cd=2&ie=UTF-8

GitOverIt
07-31-2006, 09:16 AM
Hi Chris...(my son is Chris too) if you want info on research and P I know of one researcher....Dr. Madelene Heng that is getting some good results. She has a web site and also will email you in answer to your questions about P!

here are some links to a couple articles and her web page.....also if you'd like to read more on what has been discussed here on the boards read the "TURMERIC" thread...should be somewhere here on the first page or two!

article from "DERMATOLOGY TIMES":

http://www.dermatologytimes.com/dermatologytimes/article/articleDetail.jsp?id=178388

another article from "BRAIN RESEARCH INSTITUTE":

http://64.233.161.104/search?q=cache:P5SDhD7rAKQJ:www.bri.ucla.edu/bri_weekly/news_060206.asp+Heng+psoriasis&hl=en&gl=us&ct=clnk&cd=5&ie=UTF-8


Dr Heng's website:

http://psoriainfo.org/site/

lpagano
07-31-2006, 09:21 AM
Hi Chris:

Just wanted to take the time to say hello. My son who is 36 has terrible scalp p. He is on Humeria and MTX and is clear everywhere but his scalp. He has also tried just about everything to get rid of the scalp p which also itches and drives him crazy. He uses mineral oil at night and then washes it out in the am, it helps with the build up. Every other day he uses the p&s liquid at night, but all these things do is remove the heavy scale. Let us know if the Listerene works, I am sure he would give it a try if he thought there was any chance it would help.

sumx4182
07-31-2006, 10:08 AM
Hi Chris...(my son is Chris too) if you want info on research and P I know of one researcher....Dr. Madelene Heng that is getting some good results. She has a web site and also will email you in answer to your questions about P!

here are some links to a couple articles and her web page.....also if you'd like to read more on what has been discussed here on the boards read the "TURMERIC" thread...should be somewhere here on the first page or two!

article from "DERMATOLOGY TIMES":

http://www.dermatologytimes.com/dermatologytimes/article/articleDetail.jsp?id=178388

another article from "BRAIN RESEARCH INSTITUTE":

http://64.233.161.104/search?q=cache:P5SDhD7rAKQJ:www.bri.ucla.edu/bri_weekly/news_060206.asp+Heng+psoriasis&hl=en&gl=us&ct=clnk&cd=5&ie=UTF-8


Dr Heng's website:

http://psoriainfo.org/site/
I did try turmeric capsules with no visible results. Well, it's kinda hard to notice a difference if there is one because of the pattern of flare-ups and remissions...My scalp stays bad all of the time, but my face usually flares up for 1 week every month.

GitOverIt
07-31-2006, 10:43 AM
this isn't about "taking" turmeric :D

jennmkirby
07-31-2006, 10:58 AM
Hi Chris, and welcome! Bless your heart... I don't think anyone feels the pain of having psoriasis more than a kid. I'm glad you found someone who understands and makes you feel better about it!

Have you tried a dietary approach? I'm not saying that diet is what caused your psoriasis to first appear when you were a baby. But things that we eat can cause it to stay chronic and keep flaring over and over. This seems to be true for some people... we know from other folks on the boards that changing your diet doesn't work for everybody, but it does work for a lot of us. It has worked really well for me, along with supplements and a few other things. You can find lots of information about diet changes here in previous posts. Here's a good thread about alternatives: http://www.psoriasis.org/forum/showthread.php?t=20727&page=1&pp=10
Just keep in mind that what is a trigger for one person may not be for the next... i.e. wheat, nightshades (ex. potatoes, tomatoes, eggplant, tobacco), sugar, animal fats, and dairy are very common triggers... you'll never know if they are for you, unless your skin clears up when you eliminate them! (And by eliminate them, I mean that you might have to cut them out for several months to see a difference... I suggest cutting them out all at once and see if you feel any difference. For me it only took about a week, but sometimes it does take longer. Now I'm trying to see if I can add any of them back to my diet, in small amounts, and stay relatively clear. I'm pretty sure I will have to stay away from wheat, fat, and sugar for the foreseeable future, although a little bit every once in a while doesn't seem to give me a huge flare.)

Good luck to you!

Jenn

baldwin123
07-31-2006, 11:55 AM
Welcome to the board!
Congrats on your engagement!
Good luck with the listerine treatment- let us know if it helps!
Jen

MikeK
07-31-2006, 12:27 PM
Hi Chris,

Welcome to the Board! :cool: Nice to meet you. Congratulations on your engagement. :)

I'm at work (which means that I'm not supposed to be here) so I'm going to have to keep this brief. (I'll be back later with some additional thoughts.) I seem to recall Listerine being discussed here from time to time. (I've been here since the day this board was created. The Feb. 2003 join date, that is shown in my profile, is misleading, because that's the date the current version of the board was launched. The prior version of the board was launched shorly before 9/11.) I just did a quick search and come across two posts (circa 2002) that discussed Listerine. One mentions it in passing (here's a link to: http://www.psoriasis.org/forum/showthread.php?p=13555&highlight=listerine#post13555); the other post (here's a link to it: http://www.psoriasis.org/forum/showthread.php?p=12145&highlight=Listerine#post12145) has some pretty specific suggestions. I don't recognize either screen name (and like I said, I've been here from the very beginning).

I hope this helps. I'll be back later with some additional thoughts about psoriasis research.

Mike

ohno1more
07-31-2006, 01:01 PM
Hi sumx4183

Welcome, & sorry for the reason you're here. But you've got great attitude & that's a lot of the battle.

This whole site is an incredible resource !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

NPF has tons of info.

This forum itself represents a vast storehouse of first-hand experience

I strongly encourage you to explore here, using the "search" features, or simply page back through this forum looking for thread titles that interest you.

You'll find the experiences of people who've used virtually any treatment modality , be that perscription drugs, OTC products, diet, supplements, you name it...including some you might never even have imagined !

I can't stress enough - this place is an education in " P " ! In many posts one can find links to research being done, many investigative approaches and those more focused on treatment. It's an ongoing seminar.

Good luck and regards,
Tom

abbyroad
07-31-2006, 01:08 PM
Welcome aboard Chris,
wow..infantile psoriasis :o but I am glad that your p has decreased in the past years...congratulations on finding a great gal to understand and be sympathetic to your p...that is half the battle of having to deal with p on an everyday basis...and congrats on your engagement as well.
Don't know much about the Listerine products but I myself take fish oil supplements along with other oils as flaxseed, borage and evening primrose and cod liver....it's been great for my p as well as my skin.

Good luck and we'll see you on the boards..
:)

RichJ
07-31-2006, 02:43 PM
hi chris,
sorry i can't help much but welcome to the p family. you have met some of the wonderful people on here and will find alot of great info. welcome and nice to meet you.

have a good good all

richard

Stillworking
07-31-2006, 03:59 PM
Hello and welcome. I've never been able to quite clear up my scalp P even on Remicade. Still have a few patches here and there. Good luck with the Listerine. Hope it works and keep us posted. Congrats on your engagement!! A positive attitude is half the battle.