Re: Questions from an RA newbie...

[Guest guest]

In a message dated 9/23/2008 11:00:14 P.M. Central Daylight Time,

blueworld_of_fire@... writes:

1) How long have you had RA?

My pain came on gradually the last year. I was diagnosed in April

2) How long after diagnosis did you wait before taking a DMARD

When I saw the Rheum, he put me on 25 mg of Prednisone the first day. I came

back for the diagnosis three weeks later and was put on 6 mtx tablets a

week.

3) Do you take a pain medication in addition to your DMARD?

I was given some Darvon, but only use it on days that I work, and actually

not for my RA joints -- instead I take it for my upper back, which has been a

problem for a few years.

4) What is your current RA factor ratio?

He doesn't check it. It was 8 times normal when it was tested. He said once

we knew what it was, he didn't need to keep checking it. He does do blood work

regularly though.

5) Did your RA come on suddenly and go into all joints at once, or is it a

slow progression - joint to joint slowly?

It moved all over my body. I kept going to my primary doctor with individual

problems and she was sending me all over the place. I thought it was

systemic, but she didn't believe me. The podiatrist suggested I see a Rheum. By

the

time I went, I couldn't get out of a chair, off the toilet, out of the

bathtub. Knees and upper arms, hands - mostly right hand.

dd

**************Looking for simple solutions to your real-life financial

challenges? Check out WalletPop for the latest news and information, tips and

calculators. (http://www.walletpop.com/?NCID=emlcntuswall00000001)

[Guest guest]

1) How long have you had RA?

Diagnosed first by my GP the end of August and confirmed by the

Rheumy this past Monday.

2) How long after diagnosis did you wait before taking a DMARD

First my GP had me on 60 MG of Prednisone for 5 days (I called that a

teaser since is helped the pain but after stopping th epain returned)

then the Rheumy put me on 20 MG of Pred while waiting for her test

results. After the results came back she started me on " Bridge "

therapy of 7.5 MG of MTX but to continue the 20MG of Pred for another

2 weeks. Then she wants me to wean back the Pred. and increase the

MTX. So I guess you could say, she started me right away on the

DMARD.

3) Do you take a pain medication in addition to your DMARD?

She made it available to me but haven't needed it since the Pred. is

working well for now.

4) What is your current RA factor ratio?

I'm seronegative with a high SED and CRP along with clinical signs of

RA (swelling and inflammation - and of course pain and stiffness.

That seems to go without saying.)

5) Did your RA come on suddenly and go into all joints at once, or

is it a slow progression - joint to joint slowly?

Looking back now there were probably earlier signs but in the last 3

months it came on very quickly and hit my joints symetrically. Feet,

knees, hips, shoulders, elbows, neck and hands. Swelling in fingers

and elbows and inflammation all over. Seemed to come on after

returning from a trip to Brazil where I returned with a respiratory

illness. Wheezing and coughing. There's some though that while I

may have had early symptoms (one that brought me to the emergency

room last winter) the brazil trip may have been a trigger. I thin

that call that " reactive " .

Hope this helps in your quest to find relief. If you have RA, DMARDs

seem to be the way to go if you want a chance at stemming the joint

damage that comes with this lovely disease.

Best of luck on your journey.

Bob

[Guest guest]

I've had RA for 6 years now. I was diagnosed at age 16.

I started on Enbrel about a month after my diagnosis (I was lucky, a

family dr. diagnosed me, and I was able to get into a rheumy within a

month and she started me on Enbrel then).

I take Naprosyn for inflammation (as needed), I take tylenol as

needed, and I have been on prednisone during bad flare ups. I've

also been prescribed vicodin and darvocet after hip injuries (vicodin

didn't help me at all).

I actually don't know my current RA factor. I recently started my

first job after college and my insurance won't cover anything to do

with pre-existing conditions for a year, so I have to save up to get

my blood work done.

When I was 15, I injured my ankle at cheerleading practice (still

haven't figured out how it started hurting) and it never healed.

When I was barely 16, I had a bad virus that mimicked asthma and had

to go to the hospital for it. I was off practices for all of my

sports for three weeks because of this. When school started back up

after Christmas break, I woke up the first day of school and my feet

were swollen and I could barely walk. It then went quickly into my

hands. After this, within the next month, it was in both ankles,

hips, shoulders, wrists, knees, and elbows. It hit each pair of

joints a few days apart, but it was very rapid.

I was very lucky to start taking Enbrel and methotrexate at the

beginning. If I had waited very long, I would have been crippled so

we treated it aggressively. I am now only on Enbrel, and

occassionally naprosyn as needed so I have been doing really well

since it all started.

Hope this helps

Autumn

[Guest guest]

Hi Brad! My symptoms started around Christmas 2006, first in my

shoulders then knees, hands, elbows, and jaw. Started taking MTX,

folic acid and naproxine in Sept 07 and saw some relief. But when I

started Remicade in November I saw a big difference within 2 weeks.

Now I am pretty much pain free and back to all normal activities. Go

in for my Remicade IV every 6 weeks. I see my rheumy about every 3

months and he says its hard to even tell I have RA. My mom developed

RA at age 66 and is also on Remicade with great results.

Not sure what my current RA factor ratio is, but both my doctor and

other info about RA says that although RA factor may be a good

indicator some people never do have a high factor or it may not be

found early in the disease.

One of the big things to remember about RA is even though you may be

doing well with pain meds only you can still be developing joint

damage.

If you'd like a really good resource (besides this group of course!)

is the book " The Arthritis Foundation's Guide to Good Living with

Rheumatoid Arthritis " . I got my at a local bookstore when I was

first diagnosed and still use it for reference.

I know how you feel about not wanting to take all the meds, I was

very resistant to starting too. Heck, I never even learned how to

swallow a pill until I was in my 40's! But looking back at how bad

my quality of life was then and how great I feel now - the meds are

totally worth it.

Sorry about the length of this post but I really want to give you

info I wish I had last year!

Good luck! Lynn L

--- In , Brad Berg <blueworld_of_fire@...>

wrote:

>

> Though anyone can answer (the more the better) these are directed

mostly toward those here who have only had RA for 5 years or less.

>

> 1) How long have you had RA?

>

> 2) How long after diagnosis did you wait before taking a DMARD?

>

> 3) Do you take a pain medication in addition to your DMARD?

>

> 4) What is your current RA factor ratio?

>

> 5) Did your RA come on suddenly and go into all joints at once, or

is it a slow progression - joint to joint slowly?

>

> I ask these questions because as I read all of your posts I wonder

at my own diagnosis.  My doctor said my RA factor was very high, and

indeed the progression has been swift.  It started in my left

shoulder last November, moved into each hand separately, then my

right shoulder, my feet, neck and jaw.  The onset was quick and it

took about four months before I experienced pain in most joints.  I

now hurt in all joints except those of my spine, unless I take an

NSAID (Ibuprofen).  I take 6 tablets a day of those, keep my body

moving alot, and take herbals and so far am still doing well.  I read

your posts and hear your stories and commiserate first-hand with

everyone's pain, but I wonder why I wouldn't be right there with you

on this.  I've pondered asking for an almost monthly RA factor test

to monitor its ups and downs in a more realtime fashion so I can

better understand what would cause those ups and downs based on my

diet, activity, etc

>

> Please don't take what may seem to be an emotionless scientific

inquiry as a mockery of anyone's condition here.  That is not at all

my intent.  I am almost one year into this disease and still haven't

started on anything major like DMARDs and wish to experiment as much

as I can with different ideas before I pollute my system with such

powerful drugs.

>

[Guest guest]

Brad,

1) I was dx'd April 2007. I know that I had been have problems at

least a year before that.

2) I saw the rheummy first time June 2007 and started prednisone,

folic acid and MTX that week.

3) I do not take any pain medication. I have never asked for any. I

would prefer to wait as long as I possibly can.

4) I have no idea what my current RA factor ratio is. I looked on my

current lab results and it isn't listed.

5) I have had problems with my hands for years because of osteo

arthritis. My feet started burning and hurting (this stopped with

MTX) at least a year before my gp tested me for RA. He did test for

diabetes and that was negative, then just kind of shrugged it off.

My x-rays did show damage already on my first visit, but I did not

see the changes until around Nov. 2007.

I don't know if you would consider that slow or fast.

Shirley

--- In , Brad Berg <blueworld_of_fire@...>

wrote:

>

> Though anyone can answer (the more the better) these are directed

mostly toward those here who have only had RA for 5 years or less.

>

> 1) How long have you had RA?

>

> 2) How long after diagnosis did you wait before taking a DMARD?

>

> 3) Do you take a pain medication in addition to your DMARD?

>

> 4) What is your current RA factor ratio?

>

> 5) Did your RA come on suddenly and go into all joints at once, or

is it a slow progression - joint to joint slowly?

>

> I ask these questions because as I read all of your posts I wonder

at my own diagnosis.  My doctor said my RA factor was very high, and

indeed the progression has been swift.  It started in my left

shoulder last November, moved into each hand separately, then my

right shoulder, my feet, neck and jaw.  The onset was quick and it

took about four months before I experienced pain in most joints.  I

now hurt in all joints except those of my spine, unless I take an

NSAID (Ibuprofen).  I take 6 tablets a day of those, keep my body

moving alot, and take herbals and so far am still doing well.  I

read your posts and hear your stories and commiserate first-hand

with everyone's pain, but I wonder why I wouldn't be right there

with you on this.  I've pondered asking for an almost monthly RA

factor test to monitor its ups and downs in a more realtime

fashion so I can better understand what would cause those ups and

downs based on my diet, activity, etc

>

> Please don't take what may seem to be an emotionless scientific

inquiry as a mockery of anyone's condition here.  That is not at all

my intent.  I am almost one year into this disease and still haven't

started on anything major like DMARDs and wish to experiment as much

as I can with different ideas before I pollute my system with such

powerful drugs.

>

[Guest guest]

Hi Brad,

 

1.  I was diagnosed in August '07.

 

2.  I started taking Plaquenil after my first rheumatology appointment in

August.  I was not really good at taking it at first because I wasn't convinced

I had RA and did not like that thought of having to take medication.  Especially

for the rest of my life.  But after my first flare I started and have continued

with the Plaquenil faithfully.  I do still get pain on occasion but if I

eliminate wheat and sugar from my diet it usually quiets back down.  Not easy to

live like that though. 

3.  I have not taken pain meds except Ibuprofen occasionally.  Have not asked

for them.  I do take fish oil, flax oil, evening primrose oil, complete greens,

bioflavenoids, calcium, B complex and a multivitamin.

4.  Last I knew the RA factor was like 342.  Just had blood work done yesterday

so I will know latest in about a week.  But my rheumatologist doesn't seem too

concerned about it.  Once you are diagnosed you are diagnosed, I think.  She

does want to check it though since I am doing pretty well with everything.  (My

xrays have not changed since last year).  My sed rate was not elevated but I had

positive ANA and anti-ccp.

5.  I first had symptoms in both hands, then feet and hips.  I work in health

care and read alot on the symptoms and thought it might be RA so I went on an

elimination diet and the symptoms quieted alot in about a week.  Have you read

the book " Healing with Whole Foods " by Pitchford?  I found it very helpful. 

It's based alot on Asian tradition.  I went to the doctor though as soon as I

could.  I had symptoms in June or July and saw primary doc in

July,rheumatologist in August.  My rheumatologist wrote a book called " Living

with Rheumatoid Arthritis " by Tammi Shlotzhauer.  This was helpful also.

Hope this helps,

   (in New York)

[ ] Questions from an RA newbie...

Though anyone can answer (the more the better) these are directed mostly toward

those here who have only had RA for 5 years or less.

1) How long have you had RA?

2) How long after diagnosis did you wait before taking a DMARD?

3) Do you take a pain medication in addition to your DMARD?

4) What is your current RA factor ratio?

5) Did your RA come on suddenly and go into all joints at once, or is it a slow

progression - joint to joint slowly?

I ask these questions because as I read all of your posts I wonder at my own

diagnosis.  My doctor said my RA factor was very high, and indeed the

progression has been swift.  It started in my left shoulder last November, moved

into each hand separately, then my right shoulder, my feet, neck and jaw.  The

onset was quick and it took about four months before I experienced pain in most

joints.  I now hurt in all joints except those of my spine, unless I take an

NSAID (Ibuprofen).  I take 6 tablets a day of those, keep my body moving alot,

and take herbals and so far am still doing well.  I read your posts and hear

your stories and commiserate first-hand with everyone's pain, but I wonder why I

wouldn't be right there with you on this.  I've pondered asking for an almost

monthly RA factor test to monitor its ups and downs in a more realtime

fashion so I can better understand what would cause those ups and downs based on

my diet, activity, etc

Please don't take what may seem to be an emotionless scientific inquiry as a

mockery of anyone's condition here.  That is not at all my intent.  I am almost

one year into this disease and still haven't started on anything major like

DMARDs and wish to experiment as much as I can with different ideas before I

pollute my system with such powerful drugs.

[Guest guest]

Though anyone can answer (the more the better) these are directed mostly

toward those here who have only had RA for 5 years or less.

1) How long have you had RA? They diagnosed me back about a year ago. I

had my left elbow swell up like it was 11 month pregnant then my left wrist.

I think I had it longer than they knew....but that is when it was official.

2) How long after diagnosis did you wait before taking a DMARD? I still am

not taking one of those besides Sulfazine. I have been reluctant to start

something else too though the way things have been going I may have to.

3) Do you take a pain medication in addition to your DMARD? No, I take

Nalfon an older cousin to Ibuprofen.

4) What is your current RA factor ratio? Don't know.

5) Did your RA come on suddenly and go into all joints at once, or is it a

slow progression - joint to joint slowly? Mine skips around but it tend to

hit certain joints harder than others.

I ask these questions because as I read all of your posts I wonder at my own

diagnosis. My doctor said my RA factor was very high, and indeed the

progression has been swift. It started in my left shoulder last November,

moved into each hand separately, then my right shoulder, my feet, neck and

jaw. The onset was quick and it took about four months before I experienced

pain in most joints. I now hurt in all joints except those of my spine,

unless I take an NSAID (Ibuprofen). I take 6 tablets a day of those, keep my

body moving alot, and take herbals and so far am still doing well. I read

your posts and hear your stories and commiserate first-hand with everyone's

pain, but I wonder why I wouldn't be right there with you on this. I've

pondered asking for an almost monthly RA factor test to monitor its ups and

downs in a more realtime fashion so I can better understand what would cause

those ups and downs based on my diet, activity, etc

[Guest guest]

--- In , Brad Berg <blueworld_of_fire@...>

wrote:

>

> Though anyone can answer (the more the better) these are directed

mostly toward those here who have only had RA for 5 years or less.

>

> 1) How long have you had RA?

x-RAYS showed erosions at DX rhuemy figured 8months so that makes

10months

>

> 2) How long after diagnosis did you wait before taking a DMARD?

1month- MTX

>

> 3) Do you take a pain medication in addition to your DMARD?

still on Prednisone- tapering off

>

> 4) What is your current RA factor ratio?

at dx

RA titer was/is 1:640 anticcp antibodies greater than 250

sed rate was 23

>

> 5) Did your RA come on suddenly and go into all joints at once, or

is it a slow progression - joint to joint slowly?

started with floating aches and pains years ago nothing bad enough

to go to doctor though, unable to open and close left hand/index

finger obviously swollen and fever worn feeling was enough to get me

to go

>

> I ask these questions because as I read all of your posts I wonder

at my own diagnosis.  My doctor said my RA factor was very high, and

indeed the progression has been swift.  It started in my left

shoulder last November, moved into each hand separately, then my

right shoulder, my feet, neck and jaw.  The onset was quick and it

took about four months before I experienced pain in most joints.  I

now hurt in all joints except those of my spine, unless I take an

NSAID (Ibuprofen).  I take 6 tablets a day of those, keep my body

moving alot, and take herbals and so far am still doing well.  I

read your posts and hear your stories and commiserate first-hand

with everyone's pain, but I wonder why I wouldn't be right there

with you on this.  I've pondered asking for an almost monthly RA

factor test to monitor its ups and downs in a more realtime

fashion so I can better understand what would cause those ups and

downs based on my diet, activity, etc

>

> Please don't take what may seem to be an emotionless scientific

inquiry as a mockery of anyone's condition here.  That is not at all

my intent.  I am almost one year into this disease and still haven't

started on anything major like DMARDs and wish to experiment as much

as I can with different ideas before I pollute my system with such

powerful drugs.

>Xrays would definatley tell you if have progressed- herbals and

ibuprofen will not slow or halt anything!!! I felt and still feel

that I don't have a choice- I need to be on a DMARD and maybe even a

biologic I can't take any chances.