Introduction

[Guest guest]

Hi ,

For me, it has been AA - sober for 23 out of the last 25 years with a relapse in 81-82 and a three week relapse Dec 2000 after my husband died and I kind of lost my faith in anything. I guess that is part of my self-pity - I mean, sheeeeeesh....isn't it time for a break here? Then I remember all the years when nothing bad happened and it's, "oh yeah, this is life. Stuff happens and you just roll with it."

I try to focus on what I have to be grateful for. The brat in me dies hard though and I get frustrated at not having as much energy. But since this is just week three, I'm still adjusting.

Thanks for the welcome,

Andi

-----Original Message-----From: Gilbert [mailto:jgilb51495@...]Sent: Monday, November 18, 2002 11:54 PM Subject: Re: [ ] Introduction

Hello Andi. My name is , but just call me CB. Welcome to the group. I too am a "newbie" here. I am in my 5th week of treatment. This is a great group. Everyone here has been extremely nice and even more helpful. I hope you find the comfort I have found being a part of this group. Good luck on your treatment. By the way, what is the 12 step program you are referring to? CB

[Guest guest]

Thanks dz,

I tried not drinking water one day just to see what would happen (gee - can you tell I'm an alcoholic?) I learned fast what a stupid move that was. The water really helps the sides stay away. I also try to walk or bike every day for at least 30 minutes which helps my attitude. And I schedule some fun things. We went to the Hornets-Sixers basketball game Tuesday night and it was awesome. I paid by being more tired the next day but it was worth it. Saturday we are going to the LSU-Ole Miss game so I am planning my naps already to be up for that one. I just find that I have to plan more than is in my nature or I get too tired to function. And eating out has changed - some sauces and foods just don't cut it anymore....especially Chinese dammit!

I go to meetings most every day. It is my spiritual food that I need as much as water.

Andi

-----Original Message-----From: imaganeer [mailto:imaganeer@...]Sent: Tuesday, November 19, 2002 10:01 AM Subject: Re: [ ] Introduction

Hi Andi. I too made some poor choices in the 70's which resulted in my being infected with hcv. I am involved in 12-step programs. I participate in AA and NA programs and meetings. I had a little guilt and shame to deal with, too. After being clean and sober for 5 years I found out I had hcv. It was really a blow to my good feelings of my recovery. But I kept at it. Keep at it with the water consumption. I always found that I suffered when I neglected it. Welcome. -dz-

[Guest guest]

Hi Andi,

Welcome Aboard!!!!! Congratulations on your new marriage!!!!!! Jan is

from Louisiana too!!!!!!!

Angel Hugs,

Diane

May Rainbow Dreams Color Your World With Love, Hope, Peace & Unity

[Guest guest]

Good Lord Jan... Are you OK???? Please let me know. OK Girl!!!!!!!!!

Angel Hugs,

Diane

May Rainbow Dreams Color Your World With Love, Hope, Peace & Unity

[Guest guest]

Jan. Don't wait around. Get back to the Dr. and let them see what is

wrong..... It may not be just a sprain. You may have done some real

damage.... I sure hope you get to feeling better Jan.... I will be

praying for ya. Never a dull moment is there girl?

Sharon that was too cute. Thank You.... I'm sure with a job description

like that there will not be any applicants. LOL....

Hi Everyone!!!!! Just got back a little while ago... My Mom is not doing

as well as she was. She looks weak and pale.... She still has the

staples in where they did the surgery on her hip and I went down and

brought it o the nurses attention.... It has been 16 days and they

should have been out. She pulled her chart and said let me see what her

follow up says.... Well she read it and said no more. That is because

she never had a follow up. She asked the Dr. yesterday about how long

they should be in.. He said 10-12 days.... Well it is now 16 days......

I know they won't be there tomorrow when I go in to visit. The nurse

said she was leaving a note for the nurse manager to read in the

morning. I will call there also to make sure something is done...

Well guys and girls.... Hope you had a super week-end. I am off to watch

the news on tv...... Good-night....

Angel Hugs,

Diane

May Rainbow Dreams Color Your World With Love, Hope, Peace & Unity

[Guest guest]

Rose,

I am getting ready to be put on ENBREL also... and I am requiring my Dr. to

do certain bloodtests. (but not the normal ones) Since ENBREL has made

infections surface in people, I want to KNOW that I don't have any suppressed

infections that might show their ugly heads when I start this drug. I am

testing for TB, Hepatitis, HIV, and any other infection I find in research

that the body might harbor. I am also going to make sure I don't have any

stomach bleeding from Celebrex. (I have been anemic for awhile now, so I

think it must be checked out.) I am requring this whether he wants to do it

or not. I am doing everything I can to research this, form my own opinions

about the side effects and why they happen, and taking every precaution to

make sure they don't happen to me. I truly believe that most of these

infections people are dying from were already present, and the ENBREL just

made the immune system decrease and caused them to surface.

My 2 cents.

In a message dated 12/3/02 3:11:59 PM Eastern Standard Time,

princesa_346@... writes:

> Hi,

> My name is Rose, I'm 30 years old and I was diagnosed with PA 6

> months ago. I've had P since I can remember. I started having joint

> pain about 10 years ago.

> I kept going to my doctor and she would just say oh you have

> arthritis there's nothing we can do about it. I finally decided I'd

> get a new doctor!

> I have a question maybe someone can help me with. My doctor is

> starting me on Enbrel. I asked her if she would do blood work before

> I get my injections just as a precaution. She told it wasn't needed.

> I disagree with her. I think it should be done. Has anyone else had

> blood work done first or am I just being silly?

> Rose

>

>

[Guest guest]

This is so exciting to read the below. I am so glad this has worked for you,

and I can only hope the same happens for me and anyone else who is using it.

You mentioned SED rate. My SED rate is ALWAYS high due to the inflammation.

Are you saying it has to be normal before going on this?

Thanks!

In a message dated 12/3/02 6:35:47 PM Eastern Standard Time,

defective91950@... writes:

> Rose...It is very important that you be tested for TB

> before you go on Enbrel. Also, you want a basic panel

> done. White count,liver enzimes etc. You should not

> start Enbrel with any kind of infection and you want a

> base line for comparison. Sed rate also. Go to the

> Enbrel or Immunex site and read up. I have been on

> Enbrel for a year and a half. It has been a miracle

> for me. I have been able to reduce my injections to

> once every two weeks from twice a week a year ago and

> basically have no symptoms except for the damage done

> before I started Enbrel. RGDS R.E.

>

[Guest guest]

Hi Rose,

I don't know the answer to your question about Enbrel, but I do have

a comment about your your doctor that misdiagnosed/underdiagnosed you

for 10 years. That sort of treatment/attitude is so maddening -- it

reminds me of how I was treated. My doctor also minimized my

complaints and offered little in the way of help for 4 years. If

I've learned anything from the experience it's to be much more

proactive. Now I try to trust my instincts, do more of my own

research and bring informed questions and suggestions to my

appointments. I found a new doctor who is much more open to

discussing options and is not condescending or arrogant. What a

difference!

I wish you much success with your Enbrel treatments...

Sharon

> Hi,

> My name is Rose, I'm 30 years old and I was diagnosed with PA 6

> months ago. I've had P since I can remember. I started having joint

> pain about 10 years ago.

> I kept going to my doctor and she would just say oh you have

> arthritis there's nothing we can do about it. I finally decided I'd

> get a new doctor!

> I have a question maybe someone can help me with. My doctor is

> starting me on Enbrel. I asked her if she would do blood work

before

> I get my injections just as a precaution. She told it wasn't

needed.

> I disagree with her. I think it should be done. Has anyone else had

> blood work done first or am I just being silly?

> Rose

[Guest guest]

Hi Sharon,

You are so right, I am tired of having a doctor who just doesn't seem

to care. I think the entire time I was at my visits she was not even

listening to a word I said! I've found a new doctor that I see in 2

weeks. My doctor now didn't even give me anything for pain until I

get the Enbrel. I'm taking Ibuprofen right now. Reading up on PA

helps me a lot, so you are right it helps to be informed. Thanks for

the encouraging words.

Rose

> Hi Rose,

>

> I don't know the answer to your question about Enbrel, but I do

have

> a comment about your your doctor that misdiagnosed/underdiagnosed

you

> for 10 years. That sort of treatment/attitude is so maddening --

it

> reminds me of how I was treated. My doctor also minimized my

> complaints and offered little in the way of help for 4 years. If

> I've learned anything from the experience it's to be much more

> proactive. Now I try to trust my instincts, do more of my own

> research and bring informed questions and suggestions to my

> appointments. I found a new doctor who is much more open to

> discussing options and is not condescending or arrogant. What a

> difference!

>

> I wish you much success with your Enbrel treatments...

> Sharon

[Guest guest]

Hi Rose,

Just my opinion, but I definately would want blood work done so that future

blood work would show any changes. My doctor did it first. I think a new

doctor is warranted. Bet most people would agree with you. Good luck to you.

Robin

princesa_346 <princesa_346@...> wrote:Hi,

My name is Rose, I'm 30 years old and I was diagnosed with PA 6

months ago. I've had P since I can remember. I started having joint

pain about 10 years ago.

I kept going to my doctor and she would just say oh you have

arthritis there's nothing we can do about it. I finally decided I'd

get a new doctor!

I have a question maybe someone can help me with. My doctor is

starting me on Enbrel. I asked her if she would do blood work before

I get my injections just as a precaution. She told it wasn't needed.

I disagree with her. I think it should be done. Has anyone else had

blood work done first or am I just being silly?

Rose

[Guest guest]

In a message dated 12/03/2002 3:12:04 PM Eastern Standard Time,

princesa_346@... writes:

> I have a question maybe someone can help me with. My doctor is

> starting me on Enbrel. I asked her if she would do blood work before

> I get my injections just as a precaution

Rose, usually for enbrel to be approved by insurance, other methods like

NSAIDS and MTX must have failed. Absolutely on NSAIDS and MTX, you need

periodic blood work to make sure your liver is ok. I don't know about

enbrel, but I would think at the very least your rheumy should have ordered a

chemistry panel and CBC just to see that you had no other underlying health

issues. By the way, this doctor is a rheumatologist right? Because if you

are treating with a GP, that is a huge mistake. You must have a doctor

specializing in arthritis, preferably who has treated a number of other

patients with PA.

[Guest guest]

Hello --

I think you will find this group very informational. I lurk a lot because I

still can't figure out how to post original messages but I can REPLY. I just

started taking arava 10 days ago after a year of methotrexate. My doc said it

would take a month before I could properly evaluate the success or lack of. My

initial impressions after the 3 day loading dose and 7 days of one per day is

that my worse spots are more painful and stiff than before but all the minor

spots are better. I feel much better in all other ways. Methotrexate made me

feel horrible -- extremely tired, intestinal difficulties and fuzzy headed. If

Arava doesn't work I guess Remicade is next for me. Enbrel is apparently the

course of last resort due to the expense and unavailabilty.

I was diagnosed a year ago and am blessed that my children were grown and one

their own by that time. I'm sure your daughter will be a joy for you and will

learn to adapt to your needs.

Best wishes, Cheri

[ ] Introduction

Hi,

My name is . I am 31 years old and I was diagnosed with PA about

6 years ago. I ran across your group doing a search on the net. My

Doctor has tried everything from Naproxen to Methotrexate. I just

started taking Arava about a week ago. I was wondering if anyone is

taking this and what kind of success they have had with it. I'm

starting to get discouraged because it seems like everything I try,

I'm either allergic to it or it my PA just doesn't respond to it. I

have a 7 year old daughter and sometimes I can't even brush her hair

in the morning. Sometimes I feel cheated..why did I have to get this

so young? It helped to find this group. Now I can talk to other

people that know what I'm going through. Anyway, Thanks for listening.

[Moderator's note: Welcome to the group , I'm glad you found us! As for

Arava, I started on it myself a few weeks ago and have to say I'm a little

disappointed. It just doesn't seem to be quite enough to do the trick for me.

Normally, as long as I supplement it with two or three 500mg Naproxen tablets

each day I feel pretty well, but last week we had some cold, rainy weather here

in Southern California and both my knees swelled up, most of my joints ached

(mildly - no flare ups yet) and I just felt generally miserable all over to the

point that I even used a few of my Vicodin. I'm scheduled for my first Remicade

infusion this coming Friday - Hurrah! :-) I will be interested to see what

others have to say about their experiences with Arava. Ron]

Please visit our Psoriatic Arthritis Group's informational web page at:

http://www.wpunj.edu/pa/ -- created and edited by list member

aka(raharris@...).

In August 2001 list member Jack aka(Cornishpro@...) began to

conduct extensive research which he publishes as the Psoriatic Arthritic

Research Newsletter monthly in our emails and digest format. Many thanks to

Jack. Back issues of the newsletter are stored on our PA webpage.

Also remember that the list archives comprise a tremendous amount of

information (Over two years of messages and answers).Feel free to browse them at

your convenience.

Let's hear from some of you lurkers out there! If you have a comment or

question chances are there is a person who has been around a while who can help

you out with an educated guess for an answer. If not we can at least steer you

in the right direction with a good website to go to for the answers.

Blessings and Peace,

Atwood-Stack, Founder

Alan , Web & List Editor

Jack , Newsletter Editor

Pat Bias, List Editor

Ron Dotson, List Editor

and many others who help moderate (thank you!)

[Guest guest]

Hi Ron,

Thanks for replying!! I was hoping for better news on the Arava. I

know how it is with the colder weather. Since the season has changed

here (I live in Washington), I've been feeling bad..lots of pain and

swelling and I've taken two injections of cortisone in my elbow

because I couldn't straighten it out anymore. I have vicodin for

those bad days also but, it is so hard on my stomach. Hey, let me

know how that Remicade works for ya.

> Hi,

> My name is . I am 31 years old and I was diagnosed with PA

about

> 6 years ago. I ran across your group doing a search on the net. My

> Doctor has tried everything from Naproxen to Methotrexate. I just

> started taking Arava about a week ago. I was wondering if anyone is

> taking this and what kind of success they have had with it. I'm

> starting to get discouraged because it seems like everything I try,

> I'm either allergic to it or it my PA just doesn't respond to it. I

> have a 7 year old daughter and sometimes I can't even brush her

hair

> in the morning. Sometimes I feel cheated..why did I have to get

this

> so young? It helped to find this group. Now I can talk to other

> people that know what I'm going through. Anyway, Thanks for

listening.

>

>

>

>

>

>

> [Moderator's note: Welcome to the group , I'm glad you found

us! As for Arava, I started on it myself a few weeks ago and have to

say I'm a little disappointed. It just doesn't seem to be quite

enough to do the trick for me. Normally, as long as I supplement it

with two or three 500mg Naproxen tablets each day I feel pretty well,

but last week we had some cold, rainy weather here in Southern

California and both my knees swelled up, most of my joints ached

(mildly - no flare ups yet) and I just felt generally miserable all

over to the point that I even used a few of my Vicodin. I'm scheduled

for my first Remicade infusion this coming Friday - Hurrah! :-) I

will be interested to see what others have to say about their

experiences with Arava. Ron]

[Guest guest]

My Dr. does regular panels every time I am there... hence why I said before

that I will have my Dr. do not the " normal " blood tests but test for

infections.

By the way, I have read a few people say the below... it is not true on

certain insurance plans. My insurance approved ENBREL back in March when I

was solely on Celebrex (NSAID). Principal insurance does not require two

failed DMARDS in order to get ENBREL. I am of child bearing age, so my Dr.

told the insurance company that Metho is NOT an option... BUT they were going

to approve it anyway. Only certain insurances require that. I am taking 2

pills of Sulfasalazine a day, which I just started until I got the ENBREL

notification. Well, I just got the notification that I can have it now, so I

have a Dr.'s appt. next week! YEY!!

I am lucky that my insurance works this way.

In a message dated 12/4/02 1:08:55 PM Eastern Standard Time, TADEL630@...

writes:

> Rose, usually for enbrel to be approved by insurance, other methods like

> NSAIDS and MTX must have failed. Absolutely on NSAIDS and MTX, you need

> periodic blood work to make sure your liver is ok. I don't know about

> enbrel, but I would think at the very least your rheumy should have ordered

> a

> chemistry panel and CBC just to see that you had no other underlying health

> issues. By the way, this doctor is a rheumatologist right? Because if you

> are treating with a GP, that is a huge mistake. You must have a doctor

> specializing in arthritis, preferably who has treated a number of other

> patients with PA.

>

[Guest guest]

In a message dated 12/4/02 1:15:14 PM Eastern Standard Time,

cdyost@... writes:

> Enbrel is apparently the course of last resort due to the expense and

> unavailabilty.

>

> '

I went to three different Rheums before I found one that suggested ENBREL

right off the bat, before any other drug. I only keep Dr.'s that look at

things the same way I do. I have been on Celebrex for 2 years, took

Prednisone 5MG's a day for 1 month, and I am currently on 2 pills of

Azulfidine a day. I manage most of my pain through weight lifting. It helps

tremendously. Make sure you have a Dr. that believes in the same treatment

options YOU believe in. I refuse to take METHO, so I went from Dr. to Dr.

until I finally found one that didn't believe in METHO and also does not

believe in long term Prednisone use. He sees treatment options for the most

part the same way I do... but it took awhile to find, and you have to do

enough research to figure out what your beliefs are when it comes to

treatment options.

[Guest guest]

> Hello --

>

> ... I lurk a lot because I still can't figure out how to

> post original messages but I can REPLY.

>

> Best wishes, Cheri

Cheri,

There are two ways to post an original message:

1) Send an email to " @ " from the

email address with which you subscribed to the forum (Note: I've

added spaces around the " @ " above so that will include the full

email address - you should remove the spaces around " @ " when sending

an email to that address).

2) Go to the main PA forum web page at:

/

or to the messages page at:

/messages

and click the " Messages->Post " hyperlink over on the left.

-- Ron

[Guest guest]

Hi ,

I am glad you have joined our group. It may comfort you a bit to know that

you are not alone. There are many young people in the group. I am 27 and was

diagnosed about a year ago. I know there are some younger than me in the

group. I have a 2 year old daughter and have hopes of having more children,

if my condition allows. There have been some days I have had to call me mom

over to change my daughter's diapers and get her dressed for the day. It

really does not seem fair.

I am blessed to have my mom live so close that she can help me. My husband

is a great help too, but he works long hours. Anyway....Welcome to the

group!

I hope you find some peace in knowing that you are not alone.

Nice to meet ya,

Meredith

[ ] Introduction

> Hi,

> My name is . I am 31 years old and I was diagnosed with PA about

> 6 years ago. I ran across your group doing a search on the net. My

> Doctor has tried everything from Naproxen to Methotrexate. I just

> started taking Arava about a week ago. I was wondering if anyone is

> taking this and what kind of success they have had with it. I'm

> starting to get discouraged because it seems like everything I try,

> I'm either allergic to it or it my PA just doesn't respond to it. I

> have a 7 year old daughter and sometimes I can't even brush her hair

> in the morning. Sometimes I feel cheated..why did I have to get this

> so young? It helped to find this group. Now I can talk to other

> people that know what I'm going through. Anyway, Thanks for listening.

>

>

[Guest guest]

Hi ,

I am also 31 and female and I feel the same way you do. I was diagnosed about 10

years ago with PA. I have been on Arava for about 4 months now and I have not

seen anything positive from it. It seems like its not strong enough for me

either. I also have taken MTX in the past for about 5-6 years but that didn't

help either. Now i've just been approved for enbrel since the remicade

infusions haven't helped me either. I am so tired of fighting a losing battle I

just pray the enbrel will slow it down. I know what you mean when you say you

feel cheated. I do too. Is the PA primarily in your hands? I ask this because

you mentioned how you couldn't brush your daughters hair. My hands are badly

crippled (although still functional) just very unattractive. I believe my

photos are posted on the website. If you want to contact me outside the group

my e-mail is thekoolkat@....

Best wishes, Kathleen in CA

[ ] Introduction

> Hi, My name is . I am

> 31 years old and I was diagnosed with PA about 6 years ago. I

> ran across your group doing a search on the net. My Doctor

> has tried everything from Naproxen to Methotrexate. I just

> started taking Arava about a week ago. I was wondering if

> anyone is taking this and what kind of success they have had

> with it. I'm starting to get discouraged because it seems

> like everything I try, I'm either allergic to it or it my PA

> just doesn't respond to it. I have a 7 year old daughter and

> sometimes I can't even brush her hair in the morning.

> Sometimes I feel cheated..why did I have to get this so

> young? It helped to find this group. Now I can talk to other

> people that know what I'm going through. Anyway, Thanks for

> listening.

>

>

>

>

>

>

> [Moderator's note: Welcome to the group , I'm glad you

> found us! As for Arava, I started on it myself a few weeks ago

> and have to say I'm a little disappointed. It just doesn't

> seem to be quite enough to do the trick for me. Normally, as

> long as I supplement it with two or three 500mg Naproxen

> tablets each day I feel pretty well, but last week we had some

> cold, rainy weather here in Southern California and both my

> knees swelled up, most of my joints ached (mildly - no flare

> ups yet) and I just felt generally miserable all over to the

> point that I even used a few of my Vicodin. I'm scheduled for

> my first Remicade infusion this coming Friday - Hurrah! :-) I

> will be interested to see what others have to say about their

> experiences with Arava. Ron]

[Guest guest]

> > ... I lurk a lot because I still can't figure out how to

> > post original messages but I can REPLY.

> >

#3--this is for those who are really computer illiterate:

Hit Reply, then delete the subject, type in yours. Then delete the old

message and put in your new one.

Ks Di

>

[Guest guest]

In a message dated 12/5/02 3:42:41 AM Pacific Standard Time,

costello@... writes:

> >>... I lurk a lot because I still can't figure out how to

> >>post original messages but I can REPLY.

> >>

> #3--this is for those who are really computer illiterate:

> Hit Reply, then delete the subject, type in yours. Then delete the old

> message and put in your new one.

> Ks Di

> >

>

Better yet, if your e-mail comes up in memo form like in AOL with:

Subect:

Date:

Reply to:

Just click on @ , and it will bring up

a blank

e-mail message window for you to write your e-mail.

Carol in vancouver

[Guest guest]

Hi Joanna,

Boy, you sound like my mother! I am 28, and my mother says the same things

about me that you said. Educate yourself, and offer to go to Doctors with

her... but don't push anything. My Mother is so supportive and so upset that

I am going through this (she always tells me she wishes it was her not me,

and she would take it away and put it all on herself if she could... it makes

me cry!) I was diagnosed at 23.

Here is what I try to tell my Mom when I feel that she is taking her support

too far. I am an educated grown woman now. It is MY job to deal with this,

and it is MY job to educate myself on this disease... which I have done. It

is MY job to make the medication decisions I have to make, and I don't need

anyone going to the Dr. with me everytime I have an appt. What do I need? I

need love and support. I need the occasional " how do you feel today " asked.

If I have a scary Dr. appt. that I need support at (like when they first

thought I had Lupus) I want you there... but I will let you know when I need

you to go with me to the Doctor. If you want to educate yourself (mom) on

this disease, please do... but don't push your knowledge on me, because it

makes me feel like you don't trust me to educate myself on this disease...

and I am the one it's happening to. Trust me... I am educating myself on

everything I can dealing with this disease and the meds that go with it.

My only advice... don't push, but offer support. Let her know that if she

needs you to research something, that you are ready for the task. If she

ever needs your support at a Doctors appt. all she needs to do is ask. If

she wants your opinion on meds she is considering taking, research them and

give your opinion. I have had to tell my mother many times to please realize

that I am a grown woman, and I will deal with this in the way that I feel

best... let me be an adult. (and let me add... there have been several times

where I have asked for her help/support in this, and I love both her and my

Dad for loving me the way they do.)

Good luck, and if you/your daughter ever want to talk, you can contact me!

In a message dated 1/12/03 6:01:49 AM Eastern Standard Time,

monepit2@... writes:

> She is a beautiful and positive person and I would just like to learn all I

> can so that I can be a better support for her. I am totally ignorant on

> this disease, I need to be educated, to learn all I can, I feel so

> helpless.

> My prayers go out for my daughter and to all of you that are effected with

> this disease.

> Joanna

>

>

>

[Guest guest]

Hi Marti,

I for one sure would like to know where the NPF mentioned our

group??? I think it's wonderful for them to do that! Was it in the

NPF Bulletin or on their website?

I've mentioned our group on the NPF forum a couple of times, but that

was quite awhile ago and those posts have probably fallen off the end

of their forum long ago.

I like the Channel Lock " Tongue & Grove " pliers myself, because their

jaws can easily be adjusted small for small things or wide for big

things. I learned long ago to get an extra pair for the kitchen

because I got tired of running out to the garage to get them. Another

thing I think is indispensable is a " V-channel " under-counter jar

opener. They're a breeze to use because you rotate the whole jar

rather than the lid. I've put pictures of those and flexible rubber

jar opener that's also nice for jar lids that aren't stuck tight in

the Photos section of our forum at:

http://snurl.com/PA_Tools

Anyone can contribute their own pictures if they wish.

If you have any trouble wrassling your web browser into submission,

feel free to send me a message at PA@... or post the problem

on the forum and someone is sure to help out. If you (or anyone else)

sends me private email, please be sure to mention the PA Forum in the

subject line, because I get so much Spam that unless I recognize the

sender or subject line material, I usually delete the message

unopened.

Glad you found us,

-- Ron

>

> Hi Everyone,

>

> Found your group throught the national Psoriasis

> Foundation(USA). Think it's a great idea and have already

> benefited from some of your information. I'm an " old hat " at

> PA (35 yrs. diagnosed at age 10) but an internet newbie.

> Still trying to fiqure it all out. I also have fibromyalgia

> which took a long time to get properly diagnosed.

> Currently taking Remicade, MTX, Ibuprofen, etc... and my skin

> is clear for the first time in 27

> years!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Arthritis doesn't

> seem to be responding as well but am still hoping. My

> favorite tip to give is PLIERS They grip all sorts of things

> when the hands don't.

>

> Best Wishes and Prayers to all of you,

>

> Marti W. Omaha,Ne USA

[Guest guest]

> Hi! I'm from Somerset in England and I was diagnosed with PA in

1998

Hi Kathy,

I have been taking methotrexate for a year or two (time runs

together) and have scarcely even had the sniffles the whole time.

Now I'm in my second winter since starting on it and keep thinking

that I'll surely catch a cold at some point...my family members go

down with the occasional cold or flu, but not me!

Incidently methotrexate helped me a lot, and my body has tolerated it

very well. I was very nervous about it since I've never been one to

take ANYTHING, prior to my development of PA.

Good luck to you!

Kathy (in Kentucky USA)

[Guest guest]

Hi Kathy welcome to the group. You mentioned a couple things that I'd like

to comment on. The first being that you are yet another example of the

effect pregnancy has on psor. We havent figured out why yet but it seems to

be the most consistent factor influencing psor seconded by upper respiratory

infection with strep b.

The other thing is your family history of cancer and contemplating MTX for

the psor. When you are taking MTX for psor it is normally advisable to take

folic acid at the same time to limit side effects namely mouth sores. But

when taking MTX as chemotherapy for cancer, at much higher doses, you would

wait until the next day after taking the MTX before taking folic acid. I

dont know if MTX in doses as used for treatment of psor might be preventitive

for cancer or what types of cancer MTX is used for but that may be something

you should look into. Orin

[Guest guest]

Kathy,

Nice to meet you. Welcome to the group. MTX does work for some people. I have

been on it for 3 years. However, MTX does lower your immune system, and you

are vulnerable to infection because of it. You just have make sure you to do

thorough handwashing and try to stay away from anyone who is just starting to

come down with a cold/flu or other virus.

The other thing, is that if you are going to have any major surgery in the

future, you should consider going off the MTX at least a week prior and

afterwards because your body is very vulnerable to staph infections and other

bacterial infections postoperatively. This is my personal opinion and the

opinion of my pharmacist.

I speak from experience. I am 44 years old now, and when I was 41 years old I

had to have a hysterectomy. I had been on MTX for about 6 months at the time.

My rheumy was not concerned about going off MTX prior to the surgery, so I

didn't. I had a vaginal hysterectomy, so no abdominal stitches. They left one

ovary in which was still healthy. Everything went fine, I went home after 2

days and was off work for 5 weeks total. The morning I was to return to work,

I woke up with a fever and abdominal pain. I ended up in the hospital for 7

more days on antibiotics because I had developed a bacterial/staph infection.

After that my temperature came down to normal, my bloodwork looked okay, and

I felt fine. I went home again for the 2nd time. I was home for 2 more days,

and then I started feeling ill again with abdominal pain and a fever. I ended

up back in the hospital. I had to developed and abscess under the ovary that

was left and had to have the ovary and abscess removed. They tried to do this

laparoscopically, but that failed because the ovary was stuck to my abdominal

wall. So I ended up with open abdominal surgery and a lot of stitches. I

remained in the hospital for another 7 days on antibiotics again, and off

work for another 6 weeks. I was off work sick for a total of 3 months, June

3, 2000, to August 26, 2000 (how I spent my summer vacation). >:0)

Anyway, MTX is a good drug, but not without risks. I am still on it at 20 mg

a week, but it is not as effective for me as it was before. I will be

starting Imuran or Remicade and reducing the MTX soon. I will be finding out

this coming Monday when I see my rheumy.

You just have to take extra close care of your health your on MTX or any of

the DMARDs because they all work to lower your immune system to slow down the

progress of our disease. Our systems are in overdrive from the PA and

psoriasis.

Does your consultant know that much about MTX? MTX in large doses is used to

treat cancer, so I don't think you are at greater risk of cancer from it.

Anyway, again, welcome to the group. We are glad to have you amongst our

ranks.

Carol in Vancouver, WA USA

In a message dated 1/17/03 10:18:47 AM Pacific Standard Time,

KatharineNourse@... writes:

> I take Vioxx and tried sulfasalzine (but it gave me stomach upsets) and am

> about to go down the methotrexate route as my consultant thinks I should

> try

> the next line of treatment. I agree, I would like to feel better than I do

> now!

>

> I am concerned about the effect on my immune system that MTX may have. The

> consultant assures me that it will not make me more susceptible to

> infection

> and viruses but I have a horrendous family history of cancer and am

> concerned

> that if I weaken my immune system I could be at even more risk.

>

> I would welcome any feedback. I've learnt a lot through reading other

> contributors' comments. Thank you. Best wishes, Kathy.

>

>