Re: My name is Cindy I'm new to group

[Guest guest]

, my heart goes out to you. you are under too much stress here you need

to relax more. PA stinks we all know that too well. The meds stink worse

and they sound real scary when explained to us . I have been through many

types in the last 11 years indocin, placqunil, predisone, lodine,

methotrexate and remicade, before that the ortho docs tried every lower anti

inflammitory drug there was. Sometime I got reaction sometimes I didnt. So

far my hair is still on my head, nausea from MTX is only in summer on day

after I take it which I can handle so far. I will admit I did end up with

chronic gastritis from meds, but I have a very high stress life and job added

to the meds and a type A personality. Taking the meds the last 11 years along

with lifestyle changes and relaxation pratices has allowed me to to hold down

a very intense job even though I had some bad flares. It is almost like AA

you do need to take it one day at a time when you are in pain and one problem

at a time to get this under control. I cried many times at work when I knew

I had to go home again becaues unfortunately I am the " boss " imagine how it

looks to be the boss and take more time off than the employees ? You can try

the meds and if you dont like them change to another you know. Some will work

for you and some wont. Not everyone get side effects either a lot depends on

you attitude. Try some relaxation methods if you know any if you dont find

one you can use anxity just keeps this going and makes pain seem worse. I am

a new member also, this is a wonderful group there will be much more great

information and comfort coming your way. for me Today I am above ground so it

is a good day. peace and health to you

Cheryl

[Guest guest]

CIndy,

That is to funny what you said about everything cracking cuz when ever I

get up from a sitting position everything cracks. I am only 25 and I have

the body of a 90 year old. I never thought the cracking was related to the

PA but I guess it is. Take care

Joy

[Guest guest]

Hi , I’m sorry that you are as scared and upset as you are, its

certainly understandable. I think everyone cries when they first find this

group. You are definitely not alone.

I grew up with PA so I don’t remember the “moment of discovery” and I was

too young to understand it anyway, but I do remember the first time that I

realized that I was “in trouble”. You might not have any visible swelling

right now but it sounds like the PA is very active and you certainly have

inflammation. I’ve always believed in aggressively treating the PA. Taking

MTX (methotrexate) or enbrel or other DMARD’s is probably a very good idea

for you right now. Fact is, the inflammation can damage your joints if left

alone. At the moment I’m not taking anything, but before my present

remission I had been on MTX for a couple years. The MTX might make you

nauseous, at least the first couple times, and you don’t want to stay on it

long term, but I’m pretty sure that it won’t make your hair fall out. I

know that when I was flaring badly and in a lot of pain, the only thing I

could think about was relieving the pain. Not telling anyone how you feel

and faking a smile in your own home is a daunting task. Perhaps you should

try to tell your husband. You can ask him to go with you to the Dr the next

time you go and expose him to this group and show him what we go through.

Have a pain free day,

Ari

[Moderators note to : No, the MTX won't make much of your hair fall out,

although I did notice a few more lost stray hairs myself than normal when I was

on 12.5 mg/week MTX, but it wasn't really noticable. As for crying when finding

this PA forum, for me it was tears of joy!]

[ ] My name is I'm new to group

Hi -

I joined this group about a week ago and each night I read the many, many

emails. I have been holding back because I am still in disbelief as to what

I have. I am 44 years old with 3 daughters. I've had psoriasis as long as

I can remember, but have learned to deal with it. I use plain old Tegrin

Psoriasis Cream -- have been on every concoction from docs, even tested some

meds, but this is the ONLY thing that works for me. Anyone in doubt, just

give a try -- I order it from the pharmacy -- pink cream in a tube,

blue/white box - $11.00.

Anyway - I have always had aches & pains - never really thought about it, I

have always been SO TIRED. I cant drive far in the afternoon b/c I will

fall asleep, but I thought it was just " me " . I felt like a hypochondriac

when I started complaining about my elbow (5 yrs ago!) went to a rheumy who

shot me w/cortisone. It hurt so badly for so long and I was jolted out of

sleep in pain. When I was pregnant my wrists were so bad they shot me

w/cortisone then too! Even suggested I have surgery for carpal tunnel -- I

NEVER thought there was a connection. About a year ago I started having

low

back pain and major HIP pain - now spreads from hip to hip and my back feels

like a concrete wall. When my doctor gave me muscle relaxers, I took one

and threw them out - thanks. My index fingers and ankles started to bother

me, and my shoulders --- then EVERYTHING started " cracking " -- I walk around

crackling - no more hide and seek for me I guess. Still - no doctor even

made the connection. I did some research and asked if it could be

psoriatic

arthritis - he said it " could " and gave me some stupid anti-inflammatory

garbage, thank you again. Nothing seemed to help me except wine (lol).

And that just helped me want to actually move enough to have sex without

dying -- I finally went to a new doctor at Yale and he blew me out of the

water with talk of methodextrine (sp?) and some other newly approved drug

(which I'm sure my insurance will deny) -- Im very scared. I went from

nothing to everything in a week. I feel afraid to try these medicines, he

put me on celebrex, but I dont feel any differently -- If I try the other

new

medicines will I be sick, will my hair fall out? Should I keep going on

day

to day in pain and keep the smile on my face and cry at night when no one is

around? I feel like this is a dream - when I read your stories I just cry

because I finally know that I am not alone. My family has no clue how I

feel

- it's my fault because I just do it all, and Im afraid for the day when I

cant do anything. Im sorry to be so long, I just dont know if I should go

ahead with aggressive medicines, or wait until I am really unable to get

around -- I dont have swelling in any joints that you can " see " which also

makes me feel like I'm crazy when I complain to my husband or my kids that

my

back/hips or whatever hurts -- like if they cant see it, it must not be so

bad. Any advice is appreciated. My jaw is even starting to hurt, and yes,

crack.

I hope we can help each other through these experiences, and maybe even

laugh

a little along the way. Thanks. in CT.

[Guest guest]

In a message dated 1/31/2002 3:02:05 AM Eastern Standard Time,

ohlilly@... writes:

> If I try the other new

> medicines will I be sick, will my hair fall out? Should I keep going on

> day

> to day in pain and keep the smile on my face and cry at night when no one

> is

> around?

Hi - I understand how you feel. PA doesn't show and so everyone thinks

you're making up the pain or you are just a wimp. You aren't. It's real and

it HURTS. If you decide to try methotrexate, it can be a scarey drug. There

is a lot on info here on it. It worked for me but it eventually caused my

liver enzymes to elevate. Your hair won't fall out (it might thin a little)

and you probably won't be sick to your stomach (a little nausea maybe). It's

important to use a DMARD (disease modifying anti rheumatic drug) to protect

your joints. Methotrexate is one, enbrel is another. I switched to enbrel

and like it much better.

The most important thing is to find a rheumatologist you like and trust.

Don't let a primary treat you - PA is too complicated. Also, if you go for

the metho., make sure you get monthly blood work and take folic acid. Again,

lots of info here in previous posts.

Hang in there - know that we all understand - and get a good rheumy and take

control of your health care - your input is essential (sounds like you are

already finding that out!)

Take care,

[Guest guest]

Hi

Your story sounds so familiar. I am about your age and have had PA for about 17

years. I have been on many different drugs down through the years.

Methotrexate has helped me so much. I have taken it for about 10 years with

very little side effects. I was only 26 when diagnosed and was so afraid I

would end up looking like the elderly patients in the waiting room at my

Rheumy's office. My Rheumy assured me that I would not end up looking like

those persons if we started treatment. But you have to get treatment and stay

on it. My hair did thin for a few years on the MX, but I would not have

survived without it. I also think Vioxx is better than Celebrex. This past

year MX has not been as effective for me as it has in the past. I am now going

to try Arava. If it doesn't help, I will move to something else. The main

thing is to keep down the swolen joints and we are so fortunate that there are

drugs to help us to that. There is a point of no return with the swolen joints

and that is why elderly people have such crippled hands, etc. There was no

medication available to them years ago when they first needed it. All that can

be done for them now is anti inflamitory drugs for the pain. Their big joints

and crippled limbs will not go away.

I know it is scary to read about the drugs needed to help the PA, but if you

keep in close contact with your Rheumy you will find something that will help

you. Good Luck!

Terri in MO

[Guest guest]

--- Terri West <twest@...> wrote:

> Hi

>

> Your story sounds so familiar. I am about your age

> and have had PA for about 17 years. I have been on

> many different drugs down through the years.

> Methotrexate has helped me so much. I have taken it

> for about 10 years with very little side effects. I

> was only 26 when diagnosed and was so afraid I would

> end up looking like the elderly patients in the

> waiting room at my Rheumy's office. My Rheumy

> assured me that I would not end up looking like

> those persons if we started treatment. But you have

> to get treatment and stay on it. My hair did thin

> for a few years on the MX, but I would not have

> survived without it. I also think Vioxx is better

> than Celebrex. This past year MX has not been as

> effective for me as it has in the past. I am now

> going to try Arava. If it doesn't help, I will move

> to something else. The main thing is to keep down

> the swolen joints and we are so fortunate that there

> are drugs to help us to that. There is a point of

> no return with the swolen joints and that is why

> elderly people have such crippled hands, etc. There

> was no medication available to them years ago when

> they first needed it. All that can be done for them

> now is anti inflamitory drugs for the pain. Their

> big joints and crippled limbs will not go away.

>

> I know it is scary to read about the drugs needed to

> help the PA, but if you keep in close contact with

> your Rheumy you will find something that will help

> you. Good Luck!

>

> Terri in MO

>

>

>

>

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