new here, new to RA

April 26, 2008

Hello everyone... I am newly diagnosed (sorta diagnosed?). Looking for

the cliff notes on RA. I can read the websites all day long but what I

want to know is what is helping you and what I have to understand

about RA. Please let me know what the most important things I need to

know that helped you... I will pick up the technical published stuff

on my own. What I want to hear is first hand how RA affects your life,

what to look forward to and what symptoms I should know are related

that I might not hear about from the medical literature. What products

help the most... treatments you are using and what if any nutritional

advise you have for diet or supplements.

Here is my story:

My primary sent me to see a rheumatologist because of pain in my

shoulder and collar bone that was protruding for over a month. I also

had blood work that indicated inflammation. I set the appointment

which was three weeks out. During that time I started having severe

swelling in my feet to a point they were stiff and hard to walk. I

also had chest pains so I went to urgent care because I hate the ER...

its like a time warp and causes anxiety for me which comes in the form

of you guessed it - chest pains. I really wasn't sure what was

happening but I knew it didn't feel like an anxiety attack (had

several over the years). The result was the doctor found a lot of

inflammation between the ribs in my chest causing the pain. EKG was

fine (thankfully). I told him about my appointment with the

rheumatologist and showed him my copy of the blood work and he said

let's get you started on Celebrex (samples) to take until your

appointment. Then my hands started swelling and having pain.

Finally I saw the rheumatologist yesterday and he said he wants to

rule out Lupus - but without waiting for the blood work he wants to

run to come back he said he is comfortable diagnosing me with RA

possibly could be Lupus. I asked which is the worse of the two evils

and he said its a toss up.

We discussed treatments... it was a moment that seems like a confusing

dream. All the treatments took a minimum of two months to see if they

worked. They caused all sorts of horrible side affects and may only

reduce my symptoms a little. His goal is 90% reduction which I am

happy to hear... and we determined to start with Plaquenil because it

seems the least of the evil and least invasive. He gave me another 15

days worth of Celebrex samples as he said the insurance may not cover

both treatments. I see him again in 2 1/2 months and he will call with

blood work results.

April 26, 2008

I hae to say that as confusing and scary as things seem for you right

now...at least you know. I think it's the not knowing and realising

that no one is looking out for your best interest that is the worst.

Sounds like you have a great Rheumy...that's good news!! The best!!

The 90% sounds wonderful too.

Whatever it is I have has been with me for YEARS but unable to seek

medical help I have had to try to push it in the background and just

deal with it. Now I have been able to get a GP and they have me on

Prednisone to reduce my swelling problems...I have two indicators

that show swelling but they don't know why...everything they test for

comes back negative and right now they're happy with just sitting on

it and not trying anything else new. Nothing for pain for

Tylenol..nothing for fatigue or anything else.

I'm seeing a Rheumy but I can't get in until June 24th...I guess

after waiting all these years to see someone what's another couple of

months? There are lots of people who have RA and Lupus too....don't

know how your insurance company deals with that. Those are two

things they have tossed around for me too but no DX of either.

Good luck to you!! Sounds like you're in good hands.

Sharon in NJ

--- In , " whisper5950 " <kallencox@...>

wrote:

>

> Hello everyone... I am newly diagnosed (sorta diagnosed?). Looking

for

> the cliff notes on RA. I can read the websites all day long but

what I

> want to know is what is helping you and what I have to understand

> about RA. Please let me know what the most important things I need

to

> know that helped you... I will pick up the technical published stuff

> on my own. What I want to hear is first hand how RA affects your

life,

> what to look forward to and what symptoms I should know are related

> that I might not hear about from the medical literature. What

products

> help the most... treatments you are using and what if any

nutritional

> advise you have for diet or supplements.

>

> Here is my story:

> My primary sent me to see a rheumatologist because of pain in my

> shoulder and collar bone that was protruding for over a month. I

also

> had blood work that indicated inflammation. I set the appointment

> which was three weeks out. During that time I started having severe

> swelling in my feet to a point they were stiff and hard to walk. I

> also had chest pains so I went to urgent care because I hate the

ER...

> its like a time warp and causes anxiety for me which comes in the

form

> of you guessed it - chest pains. I really wasn't sure what was

> happening but I knew it didn't feel like an anxiety attack (had

> several over the years). The result was the doctor found a lot of

> inflammation between the ribs in my chest causing the pain. EKG was

> fine (thankfully). I told him about my appointment with the

> rheumatologist and showed him my copy of the blood work and he said

> let's get you started on Celebrex (samples) to take until your

> appointment. Then my hands started swelling and having pain.

>

> Finally I saw the rheumatologist yesterday and he said he wants to

> rule out Lupus - but without waiting for the blood work he wants to

> run to come back he said he is comfortable diagnosing me with RA

> possibly could be Lupus. I asked which is the worse of the two evils

> and he said its a toss up.

>

> We discussed treatments... it was a moment that seems like a

confusing

> dream. All the treatments took a minimum of two months to see if

they

> worked. They caused all sorts of horrible side affects and may only

> reduce my symptoms a little. His goal is 90% reduction which I am

> happy to hear... and we determined to start with Plaquenil because

it

> seems the least of the evil and least invasive. He gave me another

15

> days worth of Celebrex samples as he said the insurance may not

cover

> both treatments. I see him again in 2 1/2 months and he will call

with

> blood work results.

>

April 26, 2008

Welcome :

I have had RA for 5 1/2 years, had never heard of it before. I was scared to

death. In five days I went from a totally functioning woman, to a pain ridden,

swollen hands, feet, etc, plus I could not walk without crutches, could not get

out of bed without my husbands help, nor could I dress myself, feed myself,

etc. I thought I was dying, or at least, had a brain tumor. Went right to my

PCP, took one look at me, said it looks like RA. Had several tests done, and he

confirmed his diagnosis. He immediately gave me shots of prednisone,

plus script for it, and I saw a rheumy the next day. She confirmed it also. I

immediately started on MTX pills, but they made me so sick and nausous 24 hrs. a

day, I then switched to giving myself the MTX injections 1x a week.

I have been on the MTX for the entire 5 1/2 years, pred. each day, also now

taking Placquenal and Sulfasazalene. This treatment is working well for me, but

I do have bad flareups from time to time. But it is a longer period in between

with no flareups. I take 10cc of MTX 1 x week, folic acid 12 hrs. after my

injection. I take 6 Sulfasaz. a day, and 2 Placq. a day. If I have a very bad

flareup, she increases the pred., until the flare is over, then I resume the

orig. dose. I also take pain med. prescrip.. at that time. I have bad

G.E.R.D., so I don't take anything over the counter except Tylenol, and whatever

she writes a presc. for me. I have never had a flareup as bad as my first one.

thank God. It was the worst time in my life. I was so afraid to look up RA,

and just recently got on this wonderful site. That's how scared I was. The

worst part for me is my hands, wrists, both feet and ankles. There are some

days I could

scream with the pain, and would just like to chop off my feet, but I do need

them, pain or not. At these times I see my Rheumy, she gives me shots, and then

increases the pred. until things quiet down. Then I go back to my reg. dose of

pred. etc. I just try to get through one day at a time.. This RA has changed

my life, but I try to do what I can when I can.

I moved to Florida from Cape Cod due to the N.E. weather I no longer could

tolerate. I am retired, have lots of hobbies, but I limit the time I can spend

on them. On the good days I can do some hobbies, etc. On the bad days I read,

rest, etc. It has changed my life, but it is the only life I have, so I try to

make the best of things.

I suggest that you find a great Rheumy that you like and have faith in. Then

decide what choices are best for you med. wise, and if they don't work well for

you, then you and your Rheumy find another plan to try. Everyone is diff., and

some treatments work well for some, and not so good for others. It does take

time for the meds. to work, so don't get discouraged if you don't see

improvement quickly. Also, it is good to be able to call your rhemy anytime for

any problems you might be experiencing in between visits.

I hope this has helped you in some way, and answered some of your questions. I

hope you are having a good day.

I care.

Barbara

[ ] new here, new to RA

lso.

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April 26, 2008

Hi !

Welcome to the group! You have come to a very supportive, caring environment

filled with wonderful, friendly, very helpful, supportive, caring individuals!

Everyone is great at answering questions and helping each other out!

It's really hard to say how it will affect your life. Each individual is

different in symptoms, and how the disease affects them. A treatment that works

for one person, may not work for another. Also, some have secondary and other

health issues in the mix with the RA. Some people with RA have a few flares and

go into remission, some seem to never go into remission. DMARDS are very

important in early treatment to help slow joint damage. I take Plaquenil, and

Sulfasalazine. Do I still have inflammation and constant pain? Yes. I've been

on Plaquenil for 2+ years, and the sulfasalazine for a little under a year (I've

been off it more than on because I keep catching infections and I cannot take it

while I have one. I had bronchitis for three months, then an upper respiratory

infection and now I have another one). Those took 6 to 8 months to begin

working for me. Many here, take biologics and seem to have great success.

Some of the most important things you can do for yourself is to rest when you

need to, don't overdo things. Use ice for inflammation, I alternate it with

heat for pain.

Some of the best information you can also get is by going to www.arthritis.org

the Arthritis Foundation. They will send you a free packet of easy to

understand information. I love this as I have cognitive dysfunction with my

Fibromyalgia (atleast they believe whats causing it as they ruled out early

alzheimers and dementia when I was 33) and I'm 36 now. I get lost when the

information gets too technical for me I joined the Foundation and read Arthritis

Today magazine which is always full of very useful tips to live life with

arthritis. They have information on handy gadgets and studies, and products

that are recommended to help us.

whisper5950 <kallencox@...> wrote: Hello

everyone... I am newly diagnosed (sorta diagnosed?). Looking for