Thanks for the welcome.

[Guest guest]

In a message dated 30/04/01 08:09:59 GMT Daylight Time, rkba@... writes:

The thing I've found to work best for scalp psoriasis is just to wash your hair and scalp every single day. I know that sounds like a lot of trouble, but since nothing seems to work well for it, that's about the only alternative. I use T-Gel shampoo because it doesn't leave a strong odor of tar.

Amy,

I agree with Ron here. This is what I do, and T-Gel is the shampoo for me.

Mike (from the UK)

[Guest guest]

Amy,

The thing I've found to work best for scalp psoriasis is just to wash

your hair and scalp every single day. I know that sounds like a lot

of trouble, but since nothing seems to work well for it, that's about

the only alternative. I use T-Gel shampoo because it doesn't leave a

strong odor of tar. I also use a kind of plastic " brush " to scrape my

scalp with when I shampoo. It's not exactly a brush, it's round

(about 3 inches diameter and one inch tall with a finger loop) and

has stout plastic " bristles " that can reach to your scalp through the

hair. I bought mine several years ago in a men's barber shop but most

drugstores probably have them.

As for drugs to use - ask your dermatologist to prescribe some

liquid " Dovonex Scalp Solution. " It comes in a 60 milli-liter squeeze

bottle and is " calcipotriene solution 0.005% " . It evaporates quickly

and completely and leaves behind no residue. You have to take an ice

pick or long needle or something and poke a bigger hole in the spout

though, because otherwise it only comes out one drop at a time.

Good Luck,

-- Ron

> I have an apppointment with a dermatologist scheduled for next

> week. Does anybody have any suggestions for what works on scalp

> psoriasis? I don't know what's out there anymore. I remember Lidex

> cream worked pretty well even though it was a mess. Let me know if

> you have any suggestions.

[Guest guest]

I use Derma Smoothe Scalp oil, Pentrax tar shampoo, and a little

diprolene steroid lotion. Sounds like alot, but my scalp is better

than in years.

Be careful with the Dovenex. I know it works for some, but I had a

terrible reaction--my face felt and looked like I had a horrible

sunburn. Peeled and everything. It took at least a month and

cortisone creams for it to go away.

Andy

[Guest guest]

In a message dated 05/02/2001 10:10:29 AM Eastern Daylight Time,

picbond@... writes:

<< I use T-Gel shampoo because it doesn't leave a

> strong odor of tar. >>

Wow - I think T-Gel really smells, but I have a thing about shampoos - a

fetish really I have at least 5 to 10 bottles in the shower at all times

- many different fragrances. But I do have the bad scalp sores. So what I

do (in case anyone out there shares my fetish!) is put on the T-gel to the

spots and let it sit a minute, then wash again with whatever fragrance I'm in

the mood for that day.

Ok, I've probably proven again that I'm weird, but you all already knew that,

right??

)

, with peach scented hair today

[Guest guest]

on 5/2/01 9:50 AM, TADEL630@... at TADEL630@... wrote:

> In a message dated 05/02/2001 10:10:29 AM Eastern Daylight Time,

> picbond@... writes:

>

> << I use T-Gel shampoo because it doesn't leave a

>> strong odor of tar. >>

> Wow - I think T-Gel really smells, but I have a thing about shampoos - a

> fetish really I have at least 5 to 10 bottles in the shower at all times

> - many different fragrances. But I do have the bad scalp sores. So what I

> do (in case anyone out there shares my fetish!) is put on the T-gel to the

> spots and let it sit a minute, then wash again with whatever fragrance I'm in

> the mood for that day.

> Ok, I've probably proven again that I'm weird, but you all already knew that,

> right??

> )

> , with peach scented hair today

>

*laugh* you are hardly weird . I've done the same thing myself. I

always hated my dad's shampoos because of the same reason. Little did I know

old dad's problem would become mine! Actually, what you are doing is very

good for your scalp. It's important to have several different kinds of

shampoo, rotate them and leave the lather in your scalp for at least five

minutes (I know, who has the kind of time? Once you make it a part of your

routine, you won't notice). That's what my first dermatologist told me and

I've noticed that when I don't follow her advice, I pay for it. Otherwise, I

can almost completely control my scalp with the shampoo and Diprolene (which

I highly recommend for it's ease of use and quick results).

deano

[Guest guest]

Perhaps my skin is particularly sensitive but I've found that some

shampoos aggravate the situation. Perhaps being careful with them

might keep the scalp problems to a minimum. It has works for me (most

of the time).

> In a message dated 05/02/2001 10:10:29 AM Eastern Daylight Time,

> picbond@a... writes:

>

> << I use T-Gel shampoo because it doesn't leave a

> > strong odor of tar. >>

> Wow - I think T-Gel really smells, but I have a thing about shampoos

- a

> fetish really I have at least 5 to 10 bottles in the shower at

all times

> - many different fragrances. But I do have the bad scalp sores. So

what I

> do (in case anyone out there shares my fetish!) is put on the T-gel

to the

> spots and let it sit a minute, then wash again with whatever

fragrance I'm in

> the mood for that day.

> Ok, I've probably proven again that I'm weird, but you all already

knew that,

> right??

> )

> , with peach scented hair today

[Guest guest]

I have also found that T-Gel, and other shampoos of this ilk make my scalp

worse; I have sensitive skin - once I laid off, it acutally got better. I do

think that each person should moderate based their own need; and not use

every day.

[ ] Re: Thanks for the welcome.

> Perhaps my skin is particularly sensitive but I've found that some

> shampoos aggravate the situation. Perhaps being careful with them

> might keep the scalp problems to a minimum. It has works for me (most

> of the time).

>

>

>

>

>

> > In a message dated 05/02/2001 10:10:29 AM Eastern Daylight Time,

> > picbond@a... writes:

> >

> > << I use T-Gel shampoo because it doesn't leave a

> > > strong odor of tar. >>

> > Wow - I think T-Gel really smells, but I have a thing about shampoos

> - a

> > fetish really I have at least 5 to 10 bottles in the shower at

> all times

> > - many different fragrances. But I do have the bad scalp sores. So

> what I

> > do (in case anyone out there shares my fetish!) is put on the T-gel

> to the

> > spots and let it sit a minute, then wash again with whatever

> fragrance I'm in

> > the mood for that day.

> > Ok, I've probably proven again that I'm weird, but you all already

> knew that,

> > right??

> > )

> > , with peach scented hair today

>

>

>

>

[Guest guest]

In a message dated 04/05/01 17:06:10 GMT Daylight Time, TADEL630@...

writes:

> Ok, I've probably proven again that I'm weird, but you all already knew

> that,

> right??

>

,

Join the rest of us 'wierdos!!!'..

Mike (from the UK)

---------------

I'm right up there with the Grand Poobah of the group :-)

Hubby has been in hospital since Monday with pneumonia. I am looking forward to

him getting out soon so I can get some sleep. He is finally showing some sign of

improvement. I will tell you that I sleep better when I do get to sleep probably

because of having to do so much extra with him laid up. I'm thinking of getting

out the wrist braces because my wrists and the backs of my hands are flaring.

Actually when they swell the extra heat (sweating) with the braces on help. PatB

[Guest guest]

Wow Peach Tracey

Sounds cool - have u got any coconut smelling stuff - it's my favorite - lol

Nigel ) (uk)

[Guest guest]

ditto

Nigel ) (uk)

[Guest guest]

In a message dated 05/06/2001 7:58:52 PM Eastern Daylight Time,

NippyNige@... writes:

<< Wow Peach Tracey

Sounds cool - have u got any coconut smelling stuff - it's my favorite - lol

Nigel ) (uk) >>

Nigel - Suave make a nice coconut one. I like that one also. Don't know if

they sell Suave products in the UK, but here in the U.S. that product is

decent and very affordable.

Here's to smelling good,

[Guest guest]

- I am going to forward your email to the list. In the future when

responding to the group you can send the email to

mailto:

Ursula Holleman

and Macey's mom (7 yr. old with CVID)

http://www..com

Thanks for the welcome.

Hi, Thanks. I am so glad to have found this site. was finally

diagnosed at about two. The first two years of his life were hell.

The hospital we were at tried everything. Infection after infection,

(52 ear infections berfore he was 15 months old) biopsy after biopsy.

They told us at 15 months old that they didn't know what was making

him sick and good luck if he made it to the age of three. We then had

our physician send us to Childrens Hospital Of Philadelphia (we live

near town, Pa). Well thank God for them. One blood test is all

it took to tell us that was IgA Immune def. They are pretty good

about things. We used to go twice a year for blood work. We haven't

had it tested in a couple of years. had a good couple of years

with no hospital visits from about the age of 6 to about 9. The past

2 years have been awful. Virus's have been really bad. He just got

over pnumenia,sinus infection and ear infection all at once. Missed

two weeks of school. Goes back for a week and is now home with a good

fever (103.1). He (sometimes) hates always being sick. Can't wait

for him to see this web site and maybe talk to some kids " just like

him " . Your child is how old?

Thanks,

Karin Hart Mom of john hart - IgA def.

[Guest guest]

Thanks Patty and Kathy for encouragement and concerns. I am just now

checking the forum. I have had a rough night and morning. Trying to

get myself up by the boots and function today.

As far as the idiopathic anaphlaxis, I only developed this after a

fundoplication procedure/surgery in 2000 for Acid Reflex. It took

care of my reflux, but, one month exactly I had my first time

episode, my bottom lip swelled inside out and of course with ER meds

and take home of predis. I was okay for 7 days then I had 2nd.

attack, my toungue swelled so big that in the ambulance I quit

breathing. and since 2000 I have not, thank God experienced that

severe, only just the begining of tingling around the mouth and I

take antihestimine for that plus my epi-pens close by. Also a month

after surgery I developed sleep apnea still using a CPAP(out of fear

I do need it) Since 2004 I haven't needed anti-histamines every 12

hrs. I might feel a little symptom and will take only a Benedryl

maybe about once or twice every 6 months.

After this reflux surgery in 2000, all the series of allergey test

and could not label the cause I was on a mission to prove the

sutures they used I had to be allergic to them. But just like

trying to find a Dr. to admit implants are causing my illness, no

one would own up to the possibilty.

I have wanted and needed these implants out since 1991 (implanted-

1988). It just hasn't worked out until now to get this far. Everyone

tells me God opens the doors in His time. But I have struggled with

my weight and can't get it off. I'm so afraid Dr. Kolb will not be

able to explant. And I know why I feel this way, because every dr.

I've seen since my weight gain, which started in 1995 has belittled

me and I changed Drs. numerous times over this- not believing I'm

trying to get it off. I used to be an areobic instructor, a reg.

tennis player in the 80's and '90. until 1991 when my health started

decining and I believe implants were a factor then. I have developed

a sadness within that no anri-depressant or anxiety med. could touch.

I took numerous medicines to help me cope with my pain and

axiety. They changed them as soon as something new would be

released. In 1995 I realized I really did not this, and emotionally

its been a nightmare without sedation. But the chemicals did not

help, except packing on lbs. (that I did not need). So now I'm not

on anything except Darvocet to help with pain(which I'm wanting to

stop also, but can't raise up to stand without them). Migraine med.

when needed and vitamins herbs. (Just to note: I have NOTHING

against chemical(medicines). But you know your own system if its

benefiting you or not. It wasn't me. I'm so toxic I feel like I

could GLOW in the dark. Ha! HA! I'm sure alot of you sisters can

relate to this. I appreciate finally people that can relate to me.

I have been so isolated, not fitting in with family and friends,

because my condition controls my existance.

God Bless all you Sisters!

a

[Guest guest]

a

I am so glad that you found this group. We are here to try and help

and to give you our support and friendship. You certainly have had

alot to deal with. Please mention all your concerns to Dr. Kolb

about the possibility of allergy to the sutures and certainly your

history of allergic reaction. What a situation to be put in.

Hopefully there are ways to control this problem so that you can go

ahead and have the surgery. You sound like you may have developed

serious multiple chemical sensitivities due to the implants also.

Why do you think that the attacks have been lessening? That is a

good sign. Your sadness or depression is very understandable and I

can really really sympathize as I am slowly coming out of seven

years of unrelenting depression caused my husband's death, this

stupid illness, and now perimenopause. I will be thinking of you

when you are at your appointment. God bless!

Love, Kathy

>

> Thanks Patty and Kathy for encouragement and concerns. I am just

now

> checking the forum. I have had a rough night and morning. Trying

to

> get myself up by the boots and function today.

> As far as the idiopathic anaphlaxis, I only developed this after

a

> fundoplication procedure/surgery in 2000 for Acid Reflex. It took

> care of my reflux, but, one month exactly I had my first time

> episode, my bottom lip swelled inside out and of course with ER

meds

> and take home of predis. I was okay for 7 days then I had 2nd.

> attack, my toungue swelled so big that in the ambulance I quit

> breathing. and since 2000 I have not, thank God experienced that

> severe, only just the begining of tingling around the mouth and I

> take antihestimine for that plus my epi-pens close by. Also a

month

> after surgery I developed sleep apnea still using a CPAP(out of

fear

> I do need it) Since 2004 I haven't needed anti-histamines every 12

> hrs. I might feel a little symptom and will take only a Benedryl

> maybe about once or twice every 6 months.

> After this reflux surgery in 2000, all the series of allergey

test

> and could not label the cause I was on a mission to prove the

> sutures they used I had to be allergic to them. But just like

> trying to find a Dr. to admit implants are causing my illness, no

> one would own up to the possibilty.

> I have wanted and needed these implants out since 1991

(implanted-

> 1988). It just hasn't worked out until now to get this far.

Everyone

> tells me God opens the doors in His time. But I have struggled

with

> my weight and can't get it off. I'm so afraid Dr. Kolb will not

be

> able to explant. And I know why I feel this way, because every dr.

> I've seen since my weight gain, which started in 1995 has

belittled

> me and I changed Drs. numerous times over this- not believing I'm

> trying to get it off. I used to be an areobic instructor, a reg.

> tennis player in the 80's and '90. until 1991 when my health

started

> decining and I believe implants were a factor then. I have

developed

> a sadness within that no anri-depressant or anxiety med. could

touch.

> I took numerous medicines to help me cope with my pain and

> axiety. They changed them as soon as something new would be

> released. In 1995 I realized I really did not this, and

emotionally

> its been a nightmare without sedation. But the chemicals did not

> help, except packing on lbs. (that I did not need). So now I'm not

> on anything except Darvocet to help with pain(which I'm wanting to

> stop also, but can't raise up to stand without them). Migraine

med.

> when needed and vitamins herbs. (Just to note: I have NOTHING

> against chemical(medicines). But you know your own system if its

> benefiting you or not. It wasn't me. I'm so toxic I feel like I

> could GLOW in the dark. Ha! HA! I'm sure alot of you sisters can

> relate to this. I appreciate finally people that can relate to

me.

> I have been so isolated, not fitting in with family and friends,

> because my condition controls my existance.

> God Bless all you Sisters!

> a

>