Look at my rook Shabazz Napier. I never seen anyone in all my years come to ATL ... - 看看我這哥們。我這輩子就沒見過來到亞特蘭大在Chick-fil-A只點了一份沙拉... http://t.cn/R7sia6dLOOK AT THIS PICTURE OF MY ARM
& January 26, 2009 at
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** Originally posted by tvsoccerdad **
I'M GOING OUT OF MY MIND THIS STUFF IS WAY OUT OF CONTROL.
GOOD THING I HAVE A SENSE OF HUMOR.
CAUSE ITS THE ONLY THING KEEPING ME GOING.
AND TO THINK LAST YEAR I WAS ALMOST COMPLETELY CLEARED.
nOT SURE WHAT HAPPENED.
January 26, 2009 at
** Originally posted by JustDucky **
Geeze, that looks painful. Are you seeing a derm? I hope so..if not, you really should see one.
& In reply to
by JustDucky2
January 26, 2009 at
** Originally posted by tvsoccerdad **
YES ITS VERY PAINFUL.
I really need help.
Trying to keep it together.
I'm seeing several doctors including derms.
I need to get some sunlight .. I can't deal with these winter months.
My wife and I recently made a bold move and bought a house in Fla.
I really don't know how we are going to support ourselves without me working ... I guess God has a plan.
& In reply to
by tvsoccerdad
January 26, 2009 at 10:06 pm
** Originally posted by MikeK **
I'm so sorry.
I know that you live on Long Island. Have you thought about coming into the City to see a derm? I'm thinking specifically of either Bruce Strober () at NYU or Mark Lebwohl () or Jacob Levitt () at Mount Sinai or even Steven Cohen () at Montefiore in the Bronx.
I know several people who are patients of all of the above derms. (One friend comes in from Long Beach, LI to see Dr. Cohen.) They all speak very highly of them. Even better, they all specialize in psoriasis and run clinical trials, etc, etc.
Dr. Stober and/or Dr. Lebwohl
both turn up at just about every NPF function in the City. They're both on the NPF's medical board: . They're both very nice guys.
I've heard through the grapevine that Dr. Stober doesn't take insurance and that the first visit is very expensive.
I heard through the grapevine that Dr. Cohen may not be taking new patients, so you may need to be aggressive in getting into seeing him.
Drs. Lebwhol and Levitt are sponsoring a team at the psoriasis walk. So you'll get to meet them there.
Dr. Levitt works very closely with the Support Group that meets in the City. (I'm the co-leader. Our next meeting is tomorrow night.) He's also a very nice guy.
There's also a support group that meets in Plainview. They might be able to direct you to a derm who specializes in psoriasis on the Island. Please get in touch with them. Here's a link to their contact information: .
I hope this helps.
Good luck.
Keep us posted.
By npf-191 (Inactive)
& In reply to
by JerseyMikeK
January 26, 2009 at 10:09 pm
** Originally posted by stametst **
Have you asked the dermatologist about receiving light treatment?
I am receiving narrowband uvb light treatment and it is a tremendous help.
I have plaque psoriasis.
You really should see a dermatologist.
May God Bless you and give you a speedy recovery.
By npf-763 (Inactive)
& In reply to
by npf-191
January 26, 2009 at 10:22 pm
** Originally posted by subtlecheetah **
A sense of humor is important!
I've been like your photo over 50-60% of my body before. You're not alone in this, but like everyone else says, you should be aggressive about treating it.
Best wishes.
& In reply to
by npf-191
January 26, 2009 at 10:27 pm
** Originally posted by tvsoccerdad **
What I like about Psoriasis ( as crazy as that may sound) is that I get to meet nice people like yourself.
I hope I get some advise that helps me eliminate this awful condition.
I would also need to get some financial advice.
My wife is doing all she can to keep our family going with two kids.
I'm affraid for my kids.
We are paying bills with the equity in our home and its wearing on me.
Maybe someone somewhere could advice me how to deal with this matter.
& In reply to
by tvsoccerdad
January 26, 2009 at 10:53 pm
** Originally posted by MikeK **
I'm sorry to hear that you're struggling with both your psoriasis and your finances. :(
Forgive me if I'm wrong, but it sounds like you don't have insurance. If that's the case, then there are some assistance programs that may be able to help you. We don't know very much about most of them, but I can tell you that two people who used post here (we haven't heard from them in years) were able to get assistance, for some very expensive medications, from a program called . (It sounds like a scam site, doesn't it?) Links to their stories can be found in a thread that was started by Leslie (Momtotwogirls). She took the time to post links and information about some assistance programs that she came across. I added the links and information to other assistance programs that people have either told me about or that have been discussed here on the Board (i.e., ). There's even links to some posts from NPF staff members who posted information about the programs that the NPF knows about. With the exception of , we don't know very much about these programs, but it still can't hurt to check them out. Here's a link to Leslie's thread:
If you do manage to get to a dermatolgist then please remember to ask for some samples of whatever meds he or she is prescribing.
A lot of people -- myself included -- use vaseline. I've been using it for years and I've never had a problem with it.
Also, there are some over the counter medications that you can try. Some of them aren't very expensive. Here's a couple of quick suggestions (in no particular order):MG217 () makes an ointment that's available in two formulas -- one with coal tar and one with salicylic acid. Coal tar has been used to treat psoriasis for many, many years and salicylic acid is one of the few doctor approved methods for removing scales. (You have to be careful when you use any product with salicylic acid. I burnt myself when I used the salicylic acid version of MG217 for too many days in a row.) Here in New Jersey, the coal tar version of both MG217 ointment and
MG217 shampoo is available at places like Walgreen's, CVS and Duane Reade. It's sometimes with the other creams and lotions, and sometimes with the first aid stuff and sometimes in a special psoriasis section. Ask if you can't find it. MG217 also makes a coal tar lotion, but that seems to be available by special order only. In my area, the salicylic acid version of MG217 ointment seems to be available only at Walgreen's. MG217 also makes a coal tar shampoo. I can usually find it with the other dandruff shampoos.Dermarest () makes a lotion and shampoo that has salicylic acid in it.Psoriasin makes several products that you can also try. I've seen them at Walgreen's. Here's a link for some additional info:
. And here's a link to a some previous discussions about Psoriasin products: ;
; .You can also try taking a bath with a product like Aveeno Oatmeal Soak. It will help soften the scales and relieve the itch. Here's a link to some additional information: . Cheaper store brands are available.You can also try taking a bath with Balnetar. Balnetar is an over the counter product that is available only by special order at most drug stores. As it's name implies, Balnetar is coal tar based. Because it is coal tar based, it stains everything and the stains can be hard to get out. Scub the tub immediately after use and use old towels and wear old clothes when you use it. Despite these problems, it can be a highly effective weapon in the war against psoriasis. I've never been able to find a website for Balnetar, so I'm going to give you a link to a site that sells it online. I've NEVER ordered anything from them, so I have no idea how reliable they are. I'm giving you the link because their descriptoin of Balnetar is a good one. Here's the link: .Some people use Desitin (that's right the diaper rash cream) to treat psoriasis in places like the underarms and groin. Here's a link to a previous discussion of about Desitin:
and here's a link to the Desitin product that they were suggesting: .For your scalp, you can use the MG217 or Dermarest shampoos that I previously mentioned. You can also use either Neutrogena/T-Gel (coal tar) or Neutrogena/T-Sal (salicylic acid). Both Neutrogena products come in several strenghts. Here's a link for some additional information: . A lot of people who post here use Paul Mitchell's tree tree oil shampoo and/or condtioner. It's very soothing. It's on the pricey side. Here's a link: . I was told that Paul Mitchell products could only be found at beauty supply stores, but I was able to find both the shampoo and conditioner at a Duane Reade in the City. You can also try Bakers P&S Oil. You apply it to your scalp and leave it on -- covered by a shower cap -- for several hours. It can be very messy and it's very hard to get used to, but it can also be a very effective weapon in the war against scalp psoriasis. Baker P&S oil is another one of those over the counter products that has to be special ordered by the drug store. I've never been able find a website for Baker's P&S oil. Fortunately, the same website that sells Balnetar also sells Baker's P&S oil. Again, I know NOTHING about them, but their description of it is a good one. Here's the link: .Finally, I find the dyes and fragrances in detergent and dryer sheets tend to irritate and dry out my psoiasis and make it even itcher then it already is. I've had similar problems with antibacterial and deoderant soaps. I haven't had any laundry related problems since I switched to &free and clear& laundry products. And, here's a link to some previous discussions about psoriasis and soap:
I also find that it helps to keep things moist. Especially in the winter time. You rally can't overdo it when it comes to putting on moisturizer. I put on some moisturizer several times a day. (For example, I have psoriasis on my hands and I put on moisturizer everytime that I wash my hands.) Which moisturzer to use is a matter of trial and error and personal preference. I find that it helps to rotate brands. I also find that it helps to use only those moisturizers that are labled &fragrance free&, &non-irritating& and/or &for sensitive skin&. Examples are Cetaphil (), Eucerin () and Palmer's Cocoa Butter formula (I prefer the unsented version -- it's hard to find) and Palmer's Shay Butter formula (it has a slight fragrance) (). Some people swear by the more expensive &body butters& from places like the Body Shop () and lately, several people have been singing the praises of a moisturizer called CaraVe: .
For the awful itch that often accompanies psoriasis, you can try:Corn SIB andAnti-itch powders creams and lotions such as Gold Bond. (I usually buy store brands.) One of my current favorites is Eucerin Itch-Relief Moisturizing Spray. I like it a lot. It's easy to apply because it's a spray and it really does help to relieve the itch. Here's a link for some additional information: . Neutrogena makes an anti-itch moisturizer that has lidocane in it. I haven't tried it but several friends swear by it. Here's a link to some additional information about it: . Other people swear by Sarna lotion:
and . I've never been able to find a website for Sarna lotion. The same site that sells Balnetar and Baker's P&S oil also sells. Again, I've never ordered anything from them, but their description of Sarna lotion is a good one: .I'm sorry that this has turned into such a novel. You're probably suffering from information overload. :rolleyes: I hope that it helps in some small way. I hope that you feel better soon. Good luck. Keep us posted.
By npf-4464 (Inactive)
& In reply to
by JerseyMikeK
January 26, 2009 at 11:09 pm
** Originally posted by jowal **
Oh tvsoccerdad it just doesnt seem fair, my heart goes out to you.
The only thing I can add is that perhaps it is worth trying the diet side of things if you havent already done so.
There are some very good threads on here about diet & juicing etc.
Sorry that I dont have any real answers... But after reading this thread, I want to say that I love this site, there are just some great people here.
All the fantastic replies MikeK, how great that reply is, so full of time & effort and trying to help.
Cheers to you all
January 27, 2009 at
** Originally posted by SOFTAILDIVER **
I started using Turmeric 500mg. I take 10 tabs twice a day. I know this is alot. A man my husband works with had very good results with this. I notice a great change in my skin...most on my arms...it's almost gone. I still have it in my scalp. I've also tanned most of my life in a tanning bed and never cleared up this fast. It's worth a try. It might give you a slight upset stomach...take it when you eat.
The guy I told about was taking up to 50 tabs a day.
Let me know if you give it a try. You can email me @
Good Luck!
& In reply to
by sandy61
January 27, 2009 at 10:16 am
** Originally posted by tvsoccerdad **
Hello gang,
Wow, Mike K... you should be a doctor.
such detail.
I'm impressed.
I enjoy reading everyones response.
I wish more would have responded.
I thinking about having an outting with us all in Atlantic City.
We could maybe make it a fund raiser and have dicussions and meetings.
Maybe Enbrel would host or Amigen along with the NPF and our network it could be a fun day.
I'm sure one of the casinos would donate a confrence room along with meals.
we could get a package deal and offer it to us members ... i think it would be fun and could potentially be a huge fund raiser.
what do you think?
& In reply to
by tvsoccerdad
January 27, 2009 at 10:36 am
** Originally posted by silbar **I need to get some sunlight .. I can't deal with these winter months.If you are seeing a Derm hopefully they are giving you light treatments. Several years ago my Derm worked with my insurance company to pay for a light box for home use, since the office treatment co-pays were adding up. It was more cost effective for both the company and myself to be able to do my own home treatments with MD follow-up. I don't know what the boxes cost (mine is an upright panel with 4 bulbs made by Ultralite). Good luck in your treatments.
It also sounds like you are under some stress (economy) and stress can exacerbate the P.
& In reply to
by Silbar60
January 27, 2009 at 10:47 am
** Originally posted by tvsoccerdad **
I have a unit at home as well.
I used it on Sunday.
I burnt myself .. I havent used it in a while .
It's funny cause I only put 12 seconds on my front and back and then 6 seconds on each side.
I thought this would be reasonable considering i have dark complexion.
Thanks for your advice its always great hearing from you ... Todd from NY
& In reply to
by npf-4464
January 27, 2009 at 11:09 am
** Originally posted by tvsoccerdad **Oh tvsoccerdad it just doesnt seem fair, my heart goes out to you.Dear Jowal,
It warms my heart to hear you speak in this fashion.
We may be suffering but we share a common goal.
I can't help but get emotional when I think about the pain and suffering we share.
However .. I dont think I would change a thing in my life.
I've met some many wonderful people with this condition.
And I notice, we are all very compassionate.
Yes, if you look at this picture of my you see hot red painful itchy embarrassing patches, but its the inner stuff that makes us who we are.
When I see my kids smiling I know I've done something right.
This picture I will show you is of my family.
It's from about five yrs ago.
By npf-4464 (Inactive)
& In reply to
by tvsoccerdad
January 27, 2009 at 11:15 am
** Originally posted by jowal **
such a nice post and picture of a gorgeous family
My biggest blessing in life is by far my family and it's so nice to see yours
& In reply to
by npf-4464
January 27, 2009 at 11:25 am
** Originally posted by tvsoccerdad **such a nice post and picture of a gorgeous family
My biggest blessing in life is by far my familyMy beautiful wife Diane, since this picture, has lost about 45 pounds.
We would exercise together each day.
to this day she still walks everyday and eats healthy.
I told her to write a book.
let me see if i have a picture of her since then.
By npf-2818 (Inactive)
& In reply to
by tvsoccerdad
January 27, 2009 at 11:28 am
** Originally posted by Pril79 **Dear Jowal,
It warms my heart to hear you speak in this fashion.
We may be suffering but we share a common goal.
I can't help but get emotional when I think about the pain and suffering we share.
However .. I dont think I would change a thing in my life.
I've met some many wonderful people with this condition.
And I notice, we are all very compassionate.
Yes, if you look at this picture of my you see hot red painful itchy embarrassing patches, but its the inner stuff that makes us who we are.
When I see my kids smiling I know I've done something right.
This picture I will show you is of my family.
It's from about five yrs ago.Wow You have a beautiful family!!!
worth smiling about!!!
made me smile!
sorry about your P it does look painful... wish there was something i could do!
i remember reading about you burning yourself could that be the cause!
they say if you irritate your skin it can cause flair ups!
the name of the condition is like the knobler effect
(however i can't spell or say it correctly so find it is increadably difficult) so any time we scratch or rub to hard we take that risk of getting it!
I feel (personal feelings here) even our clothing can cause this issue!
to tight not tight enough rubbing causing irritations to the skin!
Nude is the way to go i guess LOL :)
as well as dry skin (doc told me that one tho)
Any way i hope all is getting better! Please keep us updated!
and welcome to the community i think i'm still sort of new!
& In reply to
by npf-2818
January 27, 2009 at 11:48 am
** Originally posted by tvsoccerdad **Nude is the way to go i guess LOL :)Dear Pril79,
Its funny you mention nude. A few years back I visited the Dead Sea in Isreal.
They have a clinic there for &p& patients.
this is where I first experienced Nude sunbathing.
At first i was not all that into it, butt (lol pun)
you get use to it .. and it was primairly for good heatlh.
So what the heck .. off went the clothes.
And to my surprise,
nobody ran off the beach screaming ... lol kidding.
Since then I went back to the dead sea cause it works .. its just that its so dam expensive and takes a month to heal, plus your away from your family.
would I do it again you ask? Yes in a heartbeat.
the time to go is in June/July they also have winter like us here in NY.
& In reply to
by tvsoccerdad
January 27, 2009 at 12:23 pm
** Originally posted by JustDucky **
What a beautiful family you have...all good looking too, might I add!!
I think you have a real good attitude..and personality. I think that is healthy for you. My p isnt nearly as bad, but I know that occasionally, some of the spots, in some of the places, hurt or burn..so I know what you have has got to hurt!
By the way..I am in NY also...right above Westchester County. We are in the ice age here. More snow is on the way, tonight and tomorrow. Are ya ready? lol
& In reply to
by JustDucky2
January 27, 2009 at 12:29 pm
** Originally posted by tvsoccerdad **By the way..I am in NY also...right above Westchester County. We are in the ice age here. More snow is on the wayDear Ducky,
I'm from Long Island.
We have our fair share of snow.
All I have to say is that we are prepared.
I bought a snow blower last year.
I'm sure you guys up north of us are getting hit big time ... Great for the skiers and snow boarders.
& In reply to
by tvsoccerdad
January 27, 2009 at 12:35 pm
** Originally posted by JustDucky **
I like snow..if I am inside..looking out at it. lol Its really very pretty on the trees and on the ugly winter grass. I think we have had about enough of it tho..by now.
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