New member Introduction

Posted February 6, 2003 · February 6, 2003

I too have PA and I am on MTX and Remicade.. the mtx

has cleared my psoriasis 90%...The PA is in FULL rage

right now. in fact i just got home from doc because my

back is killing me and he gave me a good massage mobic

and some anti infammatory shot and said go home and go

to bed. so i was checking my emails. good luck and if

you need to chat add me to your friends list

swtthing12201999 Donna

--- tljohnson@... wrote:

> Hi everyone,

>

Posted February 6, 2003 · February 6, 2003

Welcome ,

Do not feel affraid to ask or say anything here. We

are all here with the same purpose.. To deal or cope

with this thing we all have.

You will find that everyone here acts differently to

certian drugs, but one thing you will find here, is

that we all care, and we all hurt!!!

Welcome again,

in Atlanta, GA

__________________________________________________

Posted February 6, 2003 · February 6, 2003

In a message dated 2/6/2003 1:16:20 PM Eastern Standard Time,

tljohnson@... writes:

> I'm having a

> LOT of trouble adapting to the drug -- I get

> terrible dizziness at my full dose, so we've been

> playing around with dosages a little, skipping weeks

> here and there, etc. I see him again next week and

> wonder if he might take me off it and try something

> else,

HI ,

I don't take methotrexate but I known that some of the people on the board

do and the people who had trouble with the pills are injecting it with no

side effects. I hope this helps. I have been waiting for Embrel to come for

10 days and called my drug plan today. They had no record of receiving the

prescription and I mailed it personally. I had to have my rheumy call then

and now I will have to wait all over again. (about 2 weeks) Keep in touch

Janet

Posted February 6, 2003 · February 6, 2003

It's nice to meet you .

It sounds like you're frustrated and saddened by the PA. I can

understand that.

I have a way of dealing with my PA that has worked for me. Perhaps

some thought or idea will help you.

I was first diagnosed 10 years ago. I was really surprised, almost

stunned. I have been a healthy person all my life and fairly

active. At the time, I was rapidly going down hill. I couldn't hold

a pen. Walking was painful. I didn't know what to expect. How

would the disease progress? How would it affect my life?

I like to learn and drill into the meat of things until I understand

what I can do. I believe in constant improvement. Improvement

refers not only to my condition, but also in my understanding.

Becoming educated helps me advocate for myself and be an active

participant in my own treatment. This in turn improves my feeling of

control. I also strongly believe my personal situation has improved

as a result of my advocating for myself. At least three times, my

rheumy told me something about a change in my condition. He (or she)

explained it, but didn't change anything. I explained how this was

affecting my live, my level of activity and therefore my overall

health. I was able to ask questions and advocate for specific

treatment changes. Each of these changes was important and got me

back to being active, improved my health or reduced my symptoms.

Fortunately my P is not visible to others. Through trial, error and

tenacity, I have learned what best deals with my P. Through meds and

exercise, I have improved the therapeutic results concerning the PA.

I do not feel particularly limited. I continue to be active (I'm

going skiing tomorrow). Nor do I feel I am must suffer degradation

of my condition.

My PA is not me and my life goes on. What I have to do just became a

part of my daily routine.

I fee lucky to be alive today and not when my grandmother had

arthritis back in the 1960's. Who even know about PA vs. any other

type of arthritis, much less anything about different treatments?

In short, I maintain perspective, remain actively in control and go

on.

P.S. – I don't mean to diminish the issues that some of you have to

deal with. It's just not me nor is it what most PA suffers have to

deal with. I would not want to leave the impression with some new to

PA that everyone's level of problem will become similarly difficult.

Most don't.

> Hi everyone,

>

> I've been lurking on the list for about a week now

> and have had the odd question or comment, but didn't

> want to start sticking my two cents in until I'd

> introduced myself.

>

> I'm pretty new to PA, just diagnosed in October last

> year. My symptoms began in Dec. 2001, with pain and

> swelling in one toe. Last summer the arthritis began

> to spread really quickly, into other toes, then into

> several fingers, one wrist, one shoulder, one elbow,

> my neck, and both knees.

>

> In November, when my knees became involved, my

> rheumatologist put me on methotrexate. I'm having a

> LOT of trouble adapting to the drug -- I get

> terrible dizziness at my full dose, so we've been

> playing around with dosages a little, skipping weeks

> here and there, etc. I see him again next week and

> wonder if he might take me off it and try something

> else, because of these problems. But the MTX also

> has helped me a fair bit already, even at the lower

> doses. In December I was hardly able to walk and now

> the MTX has me walking well and relatively pain-free.

>

> I'm seeing an occupational therapist and a

> physiotherapist regularly for my fingers in

> particular, but sometimes I wonder if it's even

> helping. It doesn't feel like it most of the time.

>

> I'm 32, a web designer/technical writer, and single.

> I get pretty depressed sometimes about the disease,

> because it is so new to me and I'm still adjusting

> to the idea that I'm so young and have a lifetime of

> this ahead of me. And -- in reference to the

> discussion last week about relationships -- I

> confess I get depressed about whether anyone will

> " want " me when I'm such a physical mess. So right

> now the depression and also the fatigue seem as hard

> for me to deal with as the disease itself. But my

> outlook has improved since the MTX started to kick

> in: at least I feel hope that the medication can

> really help me control this disease.

>

> Anyway, there's my story... Sorry to ramble on so

> long, but I just wanted to introduce myself so I

> could join in the discussions. :-) I lurk on the

> alt.support.arthritis newsgroup but there are so

> many people there with so many different forms of

> arthritis that I tend to stay pretty quiet there.

> This group seems very informative and friendly, and

> with the focus on my particular form of arthritis I

> find it a lot more useful! I'm glad you all are

> here! :-)

>

Posted February 6, 2003 · February 6, 2003

Donna,

How long have you been on MTX? I have been on it for three weeks and still have

a ton of psoriasis.

Robin, Penny, Chance, Heidi, and Hope (Florida)

http://www.geocities.com/goldens4life2000/index.html

I too have PA and I am on MTX and Remicade.. the mtx

has cleared my psoriasis 90%...The PA is in FULL rage

right now. in fact i just got home from doc because my

back is killing me and he gave me a good massage mobic

Posted February 7, 2003 · February 7, 2003

Thanks for the warm welcome, everybody!

At 05:00 PM 2/6/03 -0500, Orin wrote:

>What form of MTX and dosage are you using now?

I'm only at 7.5mg right now, taken orally. I was at 12.5 but that's when

the dizziness got so bad. 7.5 seems semi-manageable, although I still feel

dizzy on it. I was wondering about the injections instead... I will have to

ask my rheumatologist about that.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Visit my personal web site at

http://members.shaw.ca/tljohnson/

Posted February 7, 2003 · February 7, 2003

Fred, thank you so much for the welcome and the understanding you expressed

about my frustrations with PA. I guess the problem is that it's still so

new to me, and I tend to be a depressive personality sometimes, anyway. Not

a good combination! But I am definitely becoming more proactive about my

treatment and care, as you suggested.

Right now I'm taking an arthritis self-management class, and I do a lot of

reading on arthritis and have a laundry list of things to ask my

rheumatologist at my next appointment. I feel like more information can

only be a good thing, and if the information helps me to keep the disease

under control better, that's a plus. If not, well, perhaps if I feel like

I'm taking control by being proactive then it will help me not to feel as

frustrated or depressed. I hope!

Enjoy your skiing tomorrow! I'm so excited to hear of people with PA who

continue to do such active things... it helps to give me hope too. I'm

nowhere near skiing condition right now, but one of these days, who knows? :-)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Visit my personal web site at

http://members.shaw.ca/tljohnson/

Posted February 8, 2003 · February 8, 2003

I really did enjoy skiing yesterday. The conditions were really

terrific. I skied from 11 AM until 4 PM and then went snow tubing

from an hour at 6:30. The really good thing is that I'm not sore at

all (well maybe a little, but only a little). If I could have gone

today, I would have.

I'm glad to hear that you are educating yourself about PA. You will

be a more effective advocate.

Good luck.

> Fred, thank you so much for the welcome and the understanding you

expressed

> about my frustrations with PA. I guess the problem is that it's

still so

> new to me, and I tend to be a depressive personality sometimes,

anyway. Not

> a good combination! But I am definitely becoming more proactive

about my

> treatment and care, as you suggested.

>

> Right now I'm taking an arthritis self-management class, and I do a

lot of

> reading on arthritis and have a laundry list of things to ask my

> rheumatologist at my next appointment. I feel like more information

can

> only be a good thing, and if the information helps me to keep the

disease

> under control better, that's a plus. If not, well, perhaps if I

feel like

> I'm taking control by being proactive then it will help me not to

feel as

> frustrated or depressed. I hope!

>

> Enjoy your skiing tomorrow! I'm so excited to hear of people with

PA who

> continue to do such active things... it helps to give me hope too.

I'm

> nowhere near skiing condition right now, but one of these days, who

knows? :-)

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> Visit my personal web site at

> http://members.shaw.ca/tljohnson/

Posted December 14, 2004 · December 14, 2004

Hi Carolyn

Welcome to the group. I have been a lurker for a year and just recently

started posting.

I too had very bad fingernails. This is the first year that the nails seem

attached to the nail bed. Hope it lasts.

My dermatologist told me I could have acrylics if I wanted to. Many of the

nail techs also did not want to do this because they thought I was contagious.

I finally found somebody who knew about this disease and is doing my nails

now. I must admit, the acrylic helps protect my nails and at least on the

outside they look good. I guess I am a bit vain even at 58.

Take Care

Barb

Posted December 15, 2004 · December 15, 2004

welcome to the group. you will find unconditional love, support, caring, and

respect here. Additionally, the wealth of info is amazing. I don't post often,

but read everything that comes across and stockpile info like crazy.

My Derm told me at the beginning that these are Emotional diseases as well as

being physical diseases. Find some peace of mind. You are NOT some freak of

nature....believe that in your heart and in your head regardless of how people

seem to react to you. It does get hard I know. I finally found, through a

friend, a hairdresser who is not horrifed or afraid to cut my hair....one of the

places I have P is on my scalp and sometimes it is bad.

Anyway, welcome!

annie and the pugherd

[ ] New Member Introduction

Hello. My name is Carolyn and I have just joined your group. I am

a 45 year old female in Miami, Fl. Last year I was diagnosed with

psoriatic arthritis. I believe that this diagnosis is correct after

almost two years of being misdiagnosed and this causing me a great

deal of money and pain. I basically hide my illness from others as

much as I can. The areas that are affected are my fingers and to a

lesser physical apperance, my feet. Previous to the oneset of my

symptoms my personality was that of a happy and positive nature. I

still project that on the outside but the truth is I have to

challenge myself on a daily basis to overcome the fatigue and pain.

The last several holidays I have been unable to get a manicure

because the techinicians believe that I have some sort of contagious

diease. Here in Miami many of these thechs do not speak English

well and a translation must ensue. I have decide that this is too

embarrissing of an ordeal for me to endure. I have become quite

good at hiding my hands from the public. Most people don't notice

my subtle efforts to keep my hands under the table or have my palms

facing upwards to conceal the front of my fingers which are swollen

and somewhat deformed. At any given time I can have up to eight

cuts on my hands that appear that they are the result of a straight

edge blade. There is also redness. If someone does observe this I

tend to blame it on my having very fair and sensitive skin or a

allergic reaction. I believe that I have finally found a very good

rheumotologist and dermatologist. They have concluded that I should

be on Methotrexate. I rarely take it as I am terrified of the side

effects. I am single and doubt that I will meet anyone due to my

wanting to limit my social encounters. It's hard enough under

normal circumstnaces for a 45 yr. old woman to meet a great guy.

This letter has gone on much longer than I anticipated. I apologize

for that. Thank you in advance for your support.

Posted December 15, 2004 · December 15, 2004

Dear Carolyn, Welcome to the group. I'm in Florida too, north of you on

the other side of the state. I live in Port Richey, about an hour north of

Tampa. We used to live in Naples, which was more in your neck of the woods.

I'm sorry to hear your PA is so bad and the psoriasis is so much trouble for

you now.

I used to get manicures all the time too. I finally gave them up, mainly

because I didn't feel well enough to go to the appointments anymore. I hate

how my hands look too. I love rings and have a million of them. Now I

seldom ever wear one, since my hands don't need any attention drawn to them.

I have a problem called erythromelalgia, which turns my hands bright red and

they feel like they are burning all the time. I carry cold gel packs with

me everywhere I go. So far it's the only thing that even touches the pain,

and I currently take a lot of pain medication. Have you ever thought to ask

your dermatologist if they know of a good nail technician? I realize it

might be a long shot, but sometimes the nurses know a lot of things like

that. I would tell them how frustrated you are and maybe they can suggest

something or someone.

I hide my hands as well, and my gel packs with them..lol. Have you

discussed your concerns with MTX with your doctor? Not that I think all

doctors have the answers, but maybe they can reassure you that it's " safe "

for you to take. I know it has a lot of side effects, and I couldn't take

it because I had an allergic reaction. ( You can't go by me though because

I have allergic reactions to almost everything these days..) It does help a

lot of people and some of the members will tell you it's been a great drug

for them. It's always the first line of defense with PA, or at least it

seems to be.

Making a decision on your medication is hard one. I've had to make several

choices and had some rough times when the drugs didn't work. For me though,

I had to do something. I haven't been able to work or drive now in almost 4

years. I'm finally getting back a portion of my self from taking Arava. I

did try MTX, plaquinel, Sulfa drugs, Enbrel, and Humira. None of them

helped me and several of them made me really sick. I didn't give up though

and please don't either. I'm sure there is something out there that will

help you. Once you do decide to take something, just keep your eyes open

for side effects and report them to your doctor.

Please don't worry about writing a long email. That's what we are here for.

You need to get it all out and sometimes that takes a long time. My emails

are always long and it probably drives everyone nuts, but I still write

them..lol. You just feel better knowing that someone else is going through

the same things you are. Plus this group is great for knowledge on drugs

and this disease. You'll learn a lot from the members who have been through

it all.

Anyway, I'm glad you found us and I hope we can help ease your pain in some

way. Take care. Love, Fran