Newby in Distress

June 15, 2004

Hi all,

My name is Lori, and I had a rapid onset case of RA 6 months ago when my first

child was a month and half old. This disease has been the biggest challenge of

my life. I first saw a quack doctor at UNC in Chapel Hill, then went to a

standard rheumatologist in Raleigh. He hasn't been much help either. His only

solution was to give me steroid injections and to put me on Lodine (NSAID). I

had to beg him to give me a rx for DMARDS. I have begun to try various diets as

well. I went through the elimination diet, and found that tomatoes made me

flare up so that I couldn't move. I saw an allergist (I didn't tell him my

theory at first) and he confirmed that I was allergic to tomatoes and oats. Has

anyone else looked into the link between RA and allergies? I have just finished

reading The Maker's Diet by ??? Rubin. I'm wondering if anyone has had any

success with these types of diet changes or if I'm merely wasting my time. I

feel as though there are no good rheumatologists around, and that swimming

around in the sea of internet medical jargin alone. My husband loves me very

much, and is completely supportive, but as I am consumed with getting over this

disease, it's hard for him to hear about it all the time. I have never been so

lonely in all my life!!! Can anyone offer any suggestions?

June 15, 2004

Lori,

Glad you contacted the group. You'll find many helpful

people here especially a and . They can find

answers for everything, it seems like. I assume you

have been diagnosed with R/A. If so then you know

you can control it but not likely it is going to go away.

It kind of caught me off guard when you said the treatment

you have had so far. Are you sure these are board certified

Rheumatologists? Your local area Arthritis Foundation

would have a list of the Rheumatologists in your area and

you might check with them.

Stay with us here and I truly believe you'll find us very helpful.

It is so important for treatment as early as possible for this diesease

in order to stop the complications down the road. Usually

an up to date Rheumatologist would start an aggressive treatment

as soon as possible.

Let's see what the others say.

NY - Terry

June 15, 2004

Welcome Lori, It is a huge challenge, and I am so glad that you found

the group. a and , are so great to help us through this,

they will find information, and if you don't understand something you

will. So, please don't hesitate to jump right in.

Sometimes you have to shop around, until you find the right rheumy

that is right for you. He will try you on different type RA meds,

until one starts working for you.

As for the RA diet, I am looking into that also. I do think there

are some foods that agitate RA. You take care, Tawny

--- In , " Lori McKinley " <lmckinley@n...>

wrote:

> Hi all,

>

> My name is Lori, and I had a rapid onset case of RA 6 months ago

when my first child was a month and half old. This disease has been

the biggest challenge of my life. I first saw a quack doctor at UNC

in Chapel Hill, then went to a standard rheumatologist in Raleigh.

He hasn't been much help either. His only solution was to give me

steroid injections and to put me on Lodine (NSAID). I had to beg him

to give me a rx for DMARDS. I have begun to try various diets as

well. I went through the elimination diet, and found that tomatoes

made me flare up so that I couldn't move. I saw an allergist (I

didn't tell him my theory at first) and he confirmed that I was

allergic to tomatoes and oats. Has anyone else looked into the link

between RA and allergies? I have just finished reading The Maker's

Diet by ??? Rubin. I'm wondering if anyone has had any success with

these types of diet changes or if I'm merely wasting my time. I feel

as though there are no good rheumatologists around, and that swimming

around in the sea of internet medical jargin alone. My husband loves

me very much, and is completely supportive, but as I am consumed with

getting over this disease, it's hard for him to hear about it all the

time. I have never been so lonely in all my life!!! Can anyone

offer any suggestions?

>

June 15, 2004

Terry,

Yes...I have been officially diagnosed with RA. Both Rhuematologists I have

been to have been board certified, and my current doctor came well recommended.

I had to wait 4 months to get an appointment with him. I was let down by his

lack of aggressivness. Are you saying this is not the norm? I had really high

RA factor and sed rate.

[ ] Re: Newby in Distress

Lori,

Glad you contacted the group. You'll find many helpful

people here especially a and . They can find

answers for everything, it seems like. I assume you

have been diagnosed with R/A. If so then you know

you can control it but not likely it is going to go away.

It kind of caught me off guard when you said the treatment

you have had so far. Are you sure these are board certified

Rheumatologists? Your local area Arthritis Foundation

would have a list of the Rheumatologists in your area and

you might check with them.

Stay with us here and I truly believe you'll find us very helpful.

It is so important for treatment as early as possible for this diesease

in order to stop the complications down the road. Usually

an up to date Rheumatologist would start an aggressive treatment

as soon as possible.

Let's see what the others say.

NY - Terry

June 15, 2004

I've had R/a 3 years now, among many, and when

my Rheumy first saw me and tested me she

came in with the big guns. My current Rheumy

is the best Dr I have had and finally has my

R/A under control. From everything

I have read, aggressive treatment from the

start is the new norm. At least according

to the Journal of Rheumatology. Of coarse

everyone is different and has to work with

their Dr to find what is going to work best

for them.

NY - Terry

June 15, 2004

Lori,

If you lived near Winston-Salem, I would certainly recommend my

wonderful rheumatologist to you. I have a wonderful endocrinologist who

recommended him. They are both associated with Bowman-Gray School of

Medicine. I think that the best doctors are associated with medical

schools, but you said that you had tried one associated with UNC School

of Medicine. Did the one in Raleigh give you an RX for an NSAID after

you begged him? If so, which one? The general trend today is to attack

RA aggressively to prevent damage to the joints as much as possible.

Rheumies are constrained by insurance companies, I think, to a certain

extent. They usually can't start you off on one of the biologics but

may have to wait and let you suffer until you've failed with two other

DMARD's.

I was glad when I failed with two DMARD's and finally got put on

Enbrel. My insurance, which is the Blue Cross-Blue Shield for teachers

and state employees, took a month to approve me for it, so I had to

spend that month with no medication except Bextra. But it is working

very well for me.

Remember that the squeaky wheel gets the grease. Call this rheumy and

complain about the pain that you're having. My rheumy encourages his

patients to call, so I did, even though I am normally shy. If he

doesn't do anything about it, get another doctor.

Hang in there, and know that you are not alone. Sue

On Tuesday, June 15, 2004, at 12:01 PM, Lori McKinley wrote:

>

> Yes...I have been officially diagnosed with RA. Both Rhuematologists

> I have been to have been board certified, and my current doctor came

> well recommended. I had to wait 4 months to get an appointment with

> him. I was let down by his lack of aggressivness. Are you saying

> this is not the norm? I had really high RA factor and sed rate.

June 15, 2004

Hi Lori. Sometimes finding a good rheumy is hard. I would try and

find someone in your area with RA (try the Arthritis Foundation) and

get a recommendation. I think the Humira website has a link to

rheumy's, and I imagine they are one's familiar with the biologicals

and that is a good thing. You said you got a prescription for a

DMARD, which one was it? I would not stick with the rheumy you have

seen, you should not have to beg for a DMARD if you have RA.

The diet route is a good thing to explore, my mom has found that

tomatos, milk and many breads make her RA flare. But natural

methods can't and won't replace the need for aggressive drug

treatment to control the RA. You will never be over it, but you

usually can have long periods of time you are in control of it if

you have a good rheumy and good drugs (and of course, good health

insurance).

As far as being alone in this, having other people with RA to

complain to is the best medicine for that. People who don't have RA

can only listen to it for so long. They key is to get a good rhuemy

and get it under control with medication. Then keep exploring diet

and exercise until you find a good balance for you - that can have

the benefit of reducing or limiting flares.

Jennie

--- In , " Lori McKinley " <lmckinley@n...>

wrote:

> Hi all,

>

> My name is Lori, and I had a rapid onset case of RA 6 months ago

when my first child was a month and half old. This disease has been

the biggest challenge of my life. I first saw a quack doctor at UNC

in Chapel Hill, then went to a standard rheumatologist in Raleigh.

He hasn't been much help either. His only solution was to give me

steroid injections and to put me on Lodine (NSAID). I had to beg

him to give me a rx for DMARDS. I have begun to try various diets

as well. I went through the elimination diet, and found that

tomatoes made me flare up so that I couldn't move. I saw an

allergist (I didn't tell him my theory at first) and he confirmed

that I was allergic to tomatoes and oats. Has anyone else looked

into the link between RA and allergies? I have just finished

reading The Maker's Diet by ??? Rubin. I'm wondering if anyone has

had any success with these types of diet changes or if I'm merely

wasting my time. I feel as though there are no good rheumatologists

around, and that swimming around in the sea of internet medical

jargin alone. My husband loves me very much, and is completely

supportive, but as I am consumed with getting over this disease,

it's hard for him to hear about it all the time. I have never been

so lonely in all my life!!! Can anyone offer any suggestions?

>

June 16, 2004

I have great news! I took mary Sue's advice and contacted Duke about getting

involved with their new RA program. They have accepted me into one of their new

clinical trials. It's not a drug trial, but I will meet regularly with their

rhuematologist and have blood testing every several weeks to monitor ra level

and sed rate. So....I will be dropping my current rhuematologist! Duke's main

issue in the study is pain mgt. techniques, but they will advise me on my meds

as well. Thanks for all of your advice. It's so refreshing to hear from others

who have already walked in my shoes. What a blessing!