Re: Welcome to @onelist.com

October 2, 1998

Trish,

My Rh. keeps telling me that if you can walk, this is one of the best

ways to exercise. It may not seem like you are doing anything, but you

are keeping those joints moving. Too bad about the water aerobics

cause this is also a great way to exercise.

How lucky for you to be in such a beautiful state. Enjoy!

October 2, 1998

On Thu, 01 Oct 1998 23:19:32 -0700, charlotte le fleur

<maybull@...> wrote:

>Hi Folks, I probably should introduce myself, but I know most of you from ASA.

Hi Char!!!

>My story is simple. Have had what I thought was Osteoarthritis for about 8

yrs.

>Have had 2 TKRs in July. But was diagnosed with PA just aa few months ago.

The

>more I learn about it, the more I think I have had it for about 8 yrs.

Seems like a hard diagnoses to make for a lot of Docs. Do you have

Psoriasis?

Steve

http://www.zoomnet.net/~steve

October 5, 1998

charlotte le fleur wrote:

>

> Hi Folks, I probably should introduce myself, but I know most of you from ASA.

> My story is simple. Have had what I thought was Osteoarthritis for about 8

yrs.

> Have had 2 TKRs in July. But was diagnosed with PA just aa few months ago.

The

> more I learn about it, the more I think I have had it for about 8 yrs. Didnt

go

> to an RD until a few months ago, and I have learned the unless you see an RD

you

> have a good chance of getting an inaccurate diagnosis.

Hi Char,

I'm curious. Were the knee replacements due to loss of cartilege from OA

or was there bone loss as in PA?

" And the beat goes on. "

October 5, 1998

That is a very interesting question. I wish I knew the answer. I was just the

patient. They didnt volunteer the answer and at the time, I didnt know the

question.

Char

>

> Hi Char,

>

> I'm curious. Were the knee replacements due to loss of cartilege from OA

> or was there bone loss as in PA?

>

> " And the beat goes on. "

>

> ------------------------------------------------------------------------

> To unsubscribe from this mailing list, or to change your subscription

> to digest, go to the ONElist web site, at and

> select the User Center link from the menu bar on the left.

January 30, 1999

Hi all,

I am the wife of a " reluctant to post " PA spouse - age 49 ,next month

who has had bouts of PA for probably 12 years but wasn't diagnosed for

PA until last February. At that time and currently , the PA has been so

flared that Chet has not been able to work in his technical

support/engineering field. He had been on 25/methotrexate for a while,

and got some limited relief but in late December was swapped to

Aravda. He has made it through the initial headaches with this med, and

some diarreha and we thought it was making life a bit better - he even

was able to deal physically with some snow shoveling and some riding the

lawntractor/snowblower for our Pennsylvania sno-ice storm. Then the

weather changed dramatically and he now has had a week long stiff

-hurting neck (it warmer up to over 50 degrees and was spring like for a

few days.) Now it is again getting colder and we are hoping this will

bring some relief....

Friday Chet went for the first round of bloodwork and this week he will

see the rhematologist again. The same doctor also treats 4 of his first

cousins and his younger sister for the same PA. So far we believe that

Chet and only one cousin have similiar symptoms.

Possibly Chet's first " flare " was way back almost 18 years ago - he was

hospitalized for " gout " and then put on blood thinners (komidin) We

noted an almost seasonal quality to flares off and on for years and

would dread late fall... In those years he had his knees " drained " and

the x-rays, bloodwork to rule out other arthritis.

I joined the NPF late last year and find that there publications give us

ideas and keep us abreast with some new developments. Glad this board

is available to share , vent and get more ideas.

Is anyone else trying Aravda????

Jan

February 2, 1999

Welcome Jan & Chet--

I've been on Arava since mid-january--I'm still waiting for some improvement.

Hopefully soon. I know there are many others that are on Arava here as well.

The NPF is a great source for P and PA info. Hopefully with all the new meds

that are comming out, we'll all be able to go into a remission.

~~Emma in OR

February 2, 1999

Jan,

Hope you get responses that help Chet. He was hospitalized for gout?

Lower parts of the leg or did the thighs swell up also?

Pat B

February 3, 1999

Jan,

Welcome to the list and I am so sorry that your husband is having such a

hard time of it. It sounds like you are a great wife and support him so

much. I know that our spouses go through the pain with us as much as we

do. My husband is so supportive of me that I don't know what I would do

without him.

What type of drug is Aravda? This is the first time I have heard of

that name? How long was your husband on Methotrexate? It took about 3

months before I felt any type of relief. It sure helps with keeping

the Psoriasis under control.

Keep posting, venting, etc., etc. It is a great bunch of people on this

list and I think you will enjoy it.

Again, welcome.

Angera

February 4, 1999

Chet was on the methotrexate for over 9 monthes and wasn't happy with

the results at 25 mg a day. So then his doctor was talking about the

new meds that were approved in late Nov. and Chet was the first in this

area to get them. The too take a while to build up in the body

chemistry so we can't tell how much they might help. He goes to the

doctor tomorrow so maybe we'll have news for over the weekend.

Jan

February 5, 1999

Hi ,

thanks for your thoughtful not of welcome. looking forward to gathering info

and sharing support.

barbara

-owneronelist wrote:

> Hello,

>

> Welcome to the list. Please take a moment to review this message.

>

> To unsubscribe from this list, go to the ONElist web site, at

> www.onelist.com, and select the User Center link from the menu bar

> on the left. I am a Psoriatic Arthritic myself for over 25 years now.

> I have used many treatments over the years, and have found great

> support and information by using my personal computer and surfing

> the web, various newsgroups, and doing my own research. It is my hope that

> those who join this mailing list will benefit from the shared

> experiences and knowledge of the others on the list. We are all in

> this together after all.

>

> This list is moderated, so as to make it compl;etely kid safe. There are

> many kids with PA out there, and it would be great to have them

> subscribe to our list too. Any postings with profanity, dirty jokes,

> or obvious commercial purposes will be deleted by yours truly.

>

> Looking forward to a long and fruitful association,

> , ( CTNATIVE@...)

> The List Owner

April 7, 1999

Hello-

I have recently been diagnosed with this disease after years of searching for

answers to baffling symptoms. A rhuematologist diagnosed me with fibromyalgia

syndrome but when I received a second opinion from another doctor she diagnosed

me with psoriatic arthritis with fibro. symptoms. I have experienced joint pain

all over my body as well as numbness, tingling, extreme fatigue. I also have

episodes of genital lesions that show up negative for any STD or Herpes.

Have you heard of this arthritis having symptoms similar to genital herpes??

Thanks in advance for your help.

>>> < -owneronelist> 04/07 12:35 PM >>>

Hello,

Welcome to the list. Please take a moment to review this message.

To unsubscribe from this list, go to the ONElist web site, at

www.onelist.com, and select the User Center link from the menu bar

on the left. I am a Psoriatic Arthritic myself for over 25 years now.

I have used many treatments over the years, and have found great

support and information by using my personal computer and surfing

the web, various newsgroups, and doing my own research. It is my hope that

those who join this mailing list will benefit from the shared

experiences and knowledge of the others on the list. We are all in

this together after all.

This list is moderated, so as to make it compl;etely kid safe. There are

many kids with PA out there, and it would be great to have them

subscribe to our list too. Any postings with profanity, dirty jokes,

or obvious commercial purposes will be deleted by yours truly.

Looking forward to a long and fruitful association,

, ( CTNATIVE@...)

The List Owner

****************************************************

Blair

Symbol

Customer Service Coordinator-SW Area

972 241-7226 EXT 7014

Fax 972 241-7118

**************************************************

May 11, 1999

Hello Everyone:

Thanks for the welcome to the list.

I do have a question for the group: does everyone with psoriatic

arthritis experience dramatic skin problems?

I have been diagnosed with " inflammatory arthritis " but when I saw the

symptoms of PA, I feel this is a more apt diagnosis. I do not have the

lingering

skin problems that are associated with PA-have had a series of skin rashes

and some nail problems.

Glad to be here,

Rita Chenier

May 11, 1999

Hi, I just wanted to introduce myself and ask a few questions of those

of you out there. First, does the depression ever wear off? I've found

it rather difficult to deal with the fact that I will never get rid of

PA. It's amazing that since I don't look like or act like I am in pain

people just assume I am all better. Yeah right. Not a day goes by

without pain. (Sound familiar???) Secondly, I was interested in knowing

if anyone has gotten pregnant with PA. I understand that I would have to

get off the Methotrexate, etc. but I am worried about my disease

progressing while I am clearing my body and trying to concieve. Any

feedback would be helpful. Thanks, Dez

May 11, 1999

Rita,

Where as (LOL) the PA has me totally dependent on meds in order to move

I have never had much psoriasis. My scalp got bad right before I

developed the PA and I got psoriasis in a few nails and a couple of tiny

spots elsewhere but that's all for now. Having taken meth for over a

year my nails are clear and I occassionally get a rough spot on my scalp

that I use Tarsum shampoo on or else Dovonex scalp solution a couple

times. I have been very fortunate (knock on wood) concerning outbreaks

of psoriasis.

I hate to think what the psoriasis has done to my tendons. I think that

the psoriasis went " underground " and attacked the tendons instead of

staying on the surface. Anybody got an opinion on that?

Take care,

Pat B

May 12, 1999

Lynn, I had the A for 2 yrs. before I even had any real spots. My RD said

it was PA as she saw a mark on my elbow. MD in FL said I didn't. The last

yr. I have tiny bumps on the top of my feet which can be scratched off after

lotion, and have very small scaley bumps on my arms, maybe only 5 or 6 at a

time. I can eventually scrape them off after many lotion applications. They

leave a lighter color than my skin and only I can tell. I guess I am very

lucky. I am on pred., mtx. plaq., folic acid for this, but am doing great.

I have had acrylic nails for 10+ yrs. so don't notice anything now. Before i

had A or PA I had had a fungus inf. in 3 or 4 nails and when it grew enough

had another nail put on. Didn't even know about PA then. I am 66 and have

only had this for 3 yrs. so feel very fortunate. I am an RN and have had to

quit nursing because of uncertainty of being able to work 12 hr shift. I'm a

supervisor and have so much writing to do, and that was how it 1st hit me was

at work one night while I was doing a lot of reports. It just kept getting

worse with misdiagnosis from 3 diff MD. Anyway enough about that.Betty in Va.

May 12, 1999

Hi Rita,

I last saw a doctor in 1994 about PA and told that I " might " be starting to

have some PA. Well like you, I feel/know that it is PA. For one it is a

lot different from the osteoarthritis that I have in my knees - and - when I

have it, my hands are hot, very swollen (I can't bend my fingers), hurt, and

my psoraisis flares up big time! My hands will crack and bleed. The left

one is the worst.

I have recognized myself in some of the others' letters - for example, the

swollen tongue with the painful bumps.

What is it with some of these doctors? Are unwilling to acknowledge PA or

are they really that ignorant about the disease?

Lynn

>I do have a question for the group: does everyone with psoriatic

>arthritis experience dramatic skin problems?

>

May 13, 1999

Hi Lynn,

I don't have really bad skin problems as of yet. I started with mild

skin problems about 10 years ago the worst of which has always been on

my scalp. Hopefully, it won't get much worse as time goes by.

Dez

May 13, 1999

Hi Dez,

As much as I hate it on my hands, I am so thankful that I have never had it

in my hair. My g'mother had it in her eyebrows, and my mother has it on the

back of her scalp.

Lynn

May 17, 1999

Hi ,

Have had any luck with any alternative medicine, magnets or herbs? I was

just diagnosed last week. I can hardly walk .

Thanks-

Diane

May 19, 1999

Dear Diane,

I tried the magnets - no luck. Same thing with herbs. Some have sworn that

eliminating dairy and nightshades from their diets makes a huge difference.

I would say that you probably need good pain medication now and to start on a

DMARD asap! Let me know what happens with you. We all care!

May 19, 1999

Hi !

I don't mean to be stupid but I'm don't have a clue as to what " nightshades "

are? I can eliminate the milk but what the heck are the nightshades?

Perhaps a misspell for milkshake? LOL

Also,

what is a DAD? My doc has put me on red and indomethacin. I started out on

30mgs of pred for two days and have been tapering off gradually. The 1st two

days were great but today I'm on 15 mgs and the pain is back.

Thanks-

Diane

In a message dated 5/19/99 12:48:52 PM, CTNATIVE@... writes:

<<

Dear Diane,

I tried the magnets - no luck. Same thing with herbs. Some have sworn that

eliminating dairy and nightshades from their diets makes a huge difference.

I would say that you probably need good pain medication now and to start on a

DMARD asap! Let me know what happens with you. We all care!

>>

May 24, 1999

Thanks for the encouraging words. Happy to be on list! I've had PA

for several years. In process of being re-evaluated. See Dr-June 14th.

Presently on-sulfasalazine 500mg.4/day. Daypro-600mg.1-2 twice/day. Dr.

talked of putting me back on MTX-any suggestions? Thanks Mooney@...