Re: RA newbie

[Guest guest]

Hi , Welcome to the group, sorry about your diagnose of RA, I'm

glad that you found the group for support. I was diagnosed in 2002,

but I too have had it for awhile, but just was never dx.

I haven't tried Remicade there are some in the group who are, I'm

sure they will give you some information on the med. I have been

taking humira weekly, I don't really see any difference. Not sure

what my rheumy will do when I go next month.

You are not alone, we all go through the same problems, you take

care, and will be glad to know more about you, Tawny

> Hello~

>

> I was diagnosed with RA a few months ago, but I think that I

> have had it longer than that...I was just never diagnosed. I don't

> not know anyone with RA, and everyone around me doesn't know what I

> am going through. I had told my daughter that it would be a good

> idea to join a support group and she told me about the

> groups...so here I am. I am in consist pain 24/7 and no one in my

> family will accept the fact that I am in pain. And it would do me

> some good to talk to someone going through the same experice, it

> would make things a lot easier. I am currently taking methotraxate,

> and plaquenil amoung other things to control swelling, high blood

> pressure and muscle spasms. And my rheumy thinks that I should

start

> taking Remicade (does anyone have any thoughts on this or has

anyone

> ever taken Remicade?).

> I am sooooo relived to find a place where there are other

people

> going through the same thing (I am really not alone). I am also

very

> lucky to have a good Rheumy

>

>

> Talk to you all later

> ~~

[Guest guest]

Welcome to the group! I am 33 and was diagnosed about a year ago.

My mom also has RA and has for over 20 years. Your rheumy wants you

to take Remicade becuase it is one of three biological drugs that

have the best chance of slowing or stopping the progression of the

disease. I am not sure why your doctor suggests Remicade over

Humira, unless it is because your insurance covers one and not the

other. My rheumy let me pick, and I chose Humira because I can do

the injections myself vs. going to a clinic or dr. office for hours

to get the treatment (even though it's administered less

frequently). It's better that I don't have to take the time off

work to go and do that. My mom has been on Enbrel (the first

biological) since it was in the trial phase and will be switching to

Remicade next month becuase she is going on medicaid and it's the

only one of the three covered by medicaid (it's considered a

treatment vs. a prescription).

It's common to have RA for a while before being diagnosed,

especially if you've never heard of it before. I knew I diagnosis

was coming 9 months before it was official, but that's because of my

family history. My mom and I suspected it was RA before I even got

to the rheumatologist.

It is possible lessen the pain you are in through medication. If

you are in that much pain, tell your rheumy and see what else can be

done. Remicade would probably do a lot to help you, as it is usually

prescribed (and paid for by insurance) only after the other drugs

have failed to control the RA alone. And it does sound like your

current mix of meds is not controlling your RA. Getting the RA

under control often takes some time and trial and error, and takes

working closely with your rheumy, being communicative about the

severity of your pain, swelling and stiffness, and a lot of

patience. Even once it's under control, there will be flare ups and

set backs, but you will learn to deal with them and this group will

help. The key is that when those happen, you also have to let your

rheumy know and not simply " deal " with it, as swelling will cause

joint damage and joint damage is irreversible.

There is a lot of information on the internet about Remicade and RA

to increase your understanding about the disease and the drugs.

posts great links to the latest research. Sometimes having

your family members read articles about the effects of the disease

can help them to understand. Also, read the spoon theory on this

website http://www.butyoudontlooksick.com/ to help get an

understanding of how having RA affects your life, it will also help

explain it to others.

Jennie

--- In , " more_nana " <more_nana@y...>

wrote:

> Hello~

>

> I was diagnosed with RA a few months ago, but I think that I

> have had it longer than that...I was just never diagnosed. I don't

> not know anyone with RA, and everyone around me doesn't know what

I

> am going through. I had told my daughter that it would be a good

> idea to join a support group and she told me about the

> groups...so here I am. I am in consist pain 24/7 and no one in my

> family will accept the fact that I am in pain. And it would do me

> some good to talk to someone going through the same experice, it

> would make things a lot easier. I am currently taking

methotraxate,

> and plaquenil amoung other things to control swelling, high blood

> pressure and muscle spasms. And my rheumy thinks that I should

start

> taking Remicade (does anyone have any thoughts on this or has

anyone

> ever taken Remicade?).

> I am sooooo relived to find a place where there are other

people

> going through the same thing (I am really not alone). I am also

very

> lucky to have a good Rheumy

>

>

> Talk to you all later

> ~~

[Guest guest]

Welcome, !

Sorry about your recent RA diagnosis, but I'm glad you found us.

We have several people here who have had very good results with

Remicade. Rheumatologists often recommend it or one of the other

biologics if your disease isn't well-controlled by the more traditional

DMARDs like methotrexate and Plaquenil.

Are you taking anything specifically for your pain? Since you seem to

like your rheumatologist, I urge you to call him/her and tell him/her

that you have been in pain 24/7. Please be as descriptive as possible

about the nature and intensity of your pain. There are so many

strategies that can be used to effectively treat pain that I wouldn't be

resigned to suffering. Please call your doc ASAP!

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] RA newbie

> Hello~

>

> I was diagnosed with RA a few months ago, but I think that I

> have had it longer than that...I was just never diagnosed. I don't

> not know anyone with RA, and everyone around me doesn't know what I

> am going through. I had told my daughter that it would be a good

> idea to join a support group and she told me about the

> groups...so here I am. I am in consist pain 24/7 and no one in my

> family will accept the fact that I am in pain. And it would do me

> some good to talk to someone going through the same experice, it

> would make things a lot easier. I am currently taking methotraxate,

> and plaquenil amoung other things to control swelling, high blood

> pressure and muscle spasms. And my rheumy thinks that I should start

> taking Remicade (does anyone have any thoughts on this or has anyone

> ever taken Remicade?).

> I am sooooo relived to find a place where there are other people

> going through the same thing (I am really not alone). I am also very

> lucky to have a good Rheumy

>

>

> Talk to you all later

> ~~

[Guest guest]

Hi ,

I think it depends on your insurance coverage and your rheumatologist. At

my first appointment (when I couldn't get out of a chair or off the toilet

or out of the bathtub, my RA doc started me on 30 mg of Prednisone. He

wasn't sure which disease it was at that time, but said the treatment for all

of

them started with Prednisone. I took it at 3 pm and by 6 pm, I was able to

teach my line dancing class.

In three weeks, I went back and found out it was RA. According to my

insurance, I had to first be started on Methotrexate (MTX). And slowly I would

be cut down on Prednisone until I was at 5 mg a day.

The MTX gave me quite a few side-effects, so he cut that down in half (from

8 pills once a week to 4 pills once a week). Then he tried Arava. My hair

fell out and I still felt sick.

So because he had tried two other meds, he was able to try Remicade

infusions. That has worked better, except for the flushing I have had after the

last two infusions. I'm still on 4 Mtx pills a week and the side effects vary

in intensity. And 5 mg of Prednisone and the infusion.

Oh, I also have Crohn's Disease and my GI doctor had recommended the

Remicade for both Crohn's and RA.

dd

**************We found the real ‘Hotel California’ and the ‘Seinfeld’

diner. What will you find? Explore WhereItsAt.com.

(http://www.whereitsat.com/#/music/all-spots/355/47.796964/-66.374711/2/Youve-Fo\

und-Where-Its-At?ncid=eml

cntnew00000007)

[Guest guest]

,

I was 24 when I was diagnosed w/ RA. I am a non-smoker so I don't think smoking

has anything to do with it. It's different w/ everyone on what meds that work.

I have had RA for 8 years now and I have been on different meds that work for

me. It may take a few med changes before you find what best medication reginme

that will work for you. (I am currently on sulfasalazine and plaquinal. I have

taken remicaide, methotrexate, and arava). Eight years later and I still wake up

stiff and taking hours to finally get moving. I am on narcotics for the pain

(not just for RA pain, I have fibromyalgia and an extremely painfull ventral

hernia too).

One great thing about this web board is the amount of support you have. Your

talking to people who know first hand what you are going through. I hate that I

can't do things that people our age takes for granted. I see a therapist to help

me emotionally which has helped me tremendously. One thing she told me that RA

does not define you. Pain is a feeling, it's not who you are. If you check

some old posts there is a great story called " The Spoon Therory " and it hits

home.

Try to stay positive and if you need to vent, ask questions, you are in the

right place. Welcome!!

>

> Hello All...I am a 24 year old female from Wisconsin who recently found out I

have RA. My grandmother and her father both had it as well. I also have been a

light smoker for the past 8 years which may have contributed. I am new to all of

this and would greatly appreciate any resources/info anyone can share with me on

living with RA. I have not started any meds at this point and would like to hear

what others have tried. Also, wondering how others experience pain-it seems so

spontaneous. I wake up EVERY morning stiff as a board all over-usually takes a

few hours for that to subside. I also get random sharp/limiting pain in joints

to the point where I just can't move the joint at all and even if I am not

moving the joint the pain radiates and the area gets warm-is this normal? Some

days I am " okay " and others I can barely move....

>

> --

>

[Guest guest]

Welcome ,

This is a fantastic group, and I hope you stay awhile. I advice finding

a good rheumy. I have severe RA, and I am on RA meds to stop further

joint damage. People all deal with this disease differently, and I like

to at least try, to make my life a little bit comfortable.

You will find lots of information here, and a lot of good people. As

for smoking, I've heard it can cause one's RA to flare, not sure about

that. I smoked for a very long time, I have been smoke-free 8yrs.

I hope you find what your looking for here. Someone can usually find

the answers here.

Good luck,

Tawny

>

> Hello All...I am a 24 year old female from Wisconsin who recently

found out I have RA. My grandmother and her father both had it as well.

I also have been a light smoker for the past 8 years which may have

contributed. I am new to all of this and would greatly appreciate any

resources/info anyone can share with me on living with RA. I have not

started any meds at this point and would like to hear what others have

tried. Also, wondering how others experience pain-it seems so

spontaneous. I wake up EVERY morning stiff as a board all over-usually

takes a few hours for that to subside. I also get random sharp/limiting

pain in joints to the point where I just can't move the joint at all and

even if I am not moving the joint the pain radiates and the area gets

warm-is this normal? Some days I am " okay " and others I can barely

move....

>

> --

>

[Guest guest]

Hi and welcome to the group. Let me start by saying you HAVE to find a

way to get rid of those cigarettes once and for all. Studies prove that

cigarette smoking does contribute to RA. I have been smoke free for over 3 years

now and while I can't undo the damage that I did to my body before I quit, I AM

able to prevent so much more from happening now that I am smoke free. Check out

http://community.becomeanex.org/profile/Doreen - that is my profile on the

Become An Ex site. There are a lot of awesome people there that can help you

become smoke free too.

Ok, off that soapbox... Have you seen a Rheumatologist for your RA yet? Studies

have also shown that early, aggressive therapy is essential to stopping the

joint destruction. The goal is to getting your AM stiffness to under an hour and

the joint pain as minimal as possible. You don't have to suffer. They are making

huge strides in RA treatments these days - there are so many options out there -

it is important to find the " right cocktail " for your specific needs.

If you haven't already done so, please make an appointment with a Rheumatologist

and if they don't have one available soon, ask to also be put on their

cancellation list. Get with your PC about something to help with the pain and

stiffness while you are waiting to get into the Rheumatologist. Some PC's will

also treat RA, so you may not have to wait.

Please let us know how you are doing. I wish you all the best and will pray for

pain free days for you.....Doreen

Hello All...I am a 24 year old female from Wisconsin who recently found out I

have RA. My grandmother and her father both had it as well. I also have been a

light smoker for the past 8 years which may have contributed. I am new to all of

this and would greatly appreciate any resources/info anyone can share with me on

living with RA. I have not started any meds at this point and would like to hear

what others have tried. Also, wondering how others experience pain-it seems so

spontaneous. I wake up EVERY morning stiff as a board all over-usually takes a

few hours for that to subside. I also get random sharp/limiting pain in joints

to the point where I just can't move the joint at all and even if I am not

moving the joint the pain radiates and the area gets warm-is this normal? Some

days I am " okay " and others I can barely move....

--