Re: Second rheumatologist visit

[Guest guest]

Sara, none of us can predict the future. But there is hope that your

disease can be controlled. I am doing well on Enbrel and Celebrex. If

you don't get relief, you need to just keep on complaining to your

rheumy until you get the right combination of meds for your individual

case of RA. Good luck! Sue

On Friday, December 16, 2005, at 01:42 AM, Sara wrote:

> I think the hardest thing is not knowing what will happen in the

> future - will I get better or will I get worse? I know that nobody

> can answer those questions. I'm trying to remain fairly positive

> about it all. I think it's a little bizarre that my life in 2005 has

> been divided in my mind between pre-June 20th and post-June 20th (when

> I had developed my first symptoms.)

[Guest guest]

I amon the same thing,,but my stomach has been giving me a fit...... I get dizzy

also..

just goes to show every person is different..

Loucretia,East TN

Sara <saranellm@...> wrote:

Hi -

I'm pretty new to this group, but I thought I would mention that I had

my second rheumatologist visit this afternoon. I've been on Voltarin

and Plaquenil for one month, now. I have had no side effects so far.

I did have my first case of my knuckles swelling on Dec 2nd, and it's

been on and off so far - the doctor did notice that. Since I am

somewhat better, I'm going to stay on these meds until late February

when I go back in again.

I think the hardest thing is not knowing what will happen in the

future - will I get better or will I get worse? I know that nobody

can answer those questions. I'm trying to remain fairly positive

about it all. I think it's a little bizarre that my life in 2005 has

been divided in my mind between pre-June 20th and post-June 20th (when

I had developed my first symptoms.)

Thanks for listening.

[Guest guest]

Hi Sara-

I am new to this group too, but not new to arthritis. I have had it

almost my whole life. I have had many rheumatologists. There is a lot

of arthritis in my family and one of my family members just got hit

with it. So, I will tell you what I told that person. You gotta learn

to be a rheumatology patient. These doctors see like 20 patients a

day and get another 20 calls. So, even the best and nicest doctors

hear the same story all day long. What you can do for yourself is

just keep notes and be prepared when you do talk to your doctor. Show

your doctor and tell your doctor from most important to least

important on the list. Don't minimize anything. Learn the drill (in

this order): Lab results?, what's going on (see list..pain,

functioning, fatigue, drug side effects, etc.), examination,

refills/new lab orders, next appt. Someone once told me it is like a

photograph in a dark room developing. The doctor will get a better

sense of your disease over time and which meds work for you, but you

have to be your own advocate by making the picture clear. When you

have a real issue, call the doctor and ask for the nurse. Stay on the

phone until someone will talk to you. Realize that many of the drugs

take a long time to work. It is so frustrating. Not knowing your

future also is frustrating, but I assure you, that the treatments

have come a long way. Although I am looking at a surgery myself,

these days it is not as common as it used to be to have major damage.

So, you can look forward to feeling better once you find the right

mix of medications. However, sometimes the medications can have tough

side effects. Thus, any side effects need to be added to your list to

tell your doctor. As you can tell, you need a doctor with whom you

feel a great partnership. I have had many doctors. My current

rheumatologist is the best I have had, and I wouldn't even move or

change jobs...that is how good my doctor is! Once you can put your

trust and faith in your doctor, you can stop worrying about the

future as much. Of course, things may come up here and there. I am

dealing with an issue right now, but I have not had to deal with

something like this in a long time. I feel for you. You have a tough

road ahead. Your life has changed, but there is so much that can be

done for you now. It will just take some time and patience to find

the right treatment program. Don't forget to be a good rheumatology

patient. Tell your doctor what your are experiencing. For me, nothing

worked until I was treated aggressively. It took me years to learn

how to communicate with my former doctors...it wasn't until an

orthopedic doctor wanted to do surgery and all I needed was to get on

more aggressive treatment and a few cortisone injections. I said to

the orthopedic doctor, " hey let's try a cortisone injection first "

and I also realized I either was not making myself clear to that

rheumatologist or that rheum was not hearing me. Needless to say, I

don't have those problems anymore. I have a doctor with whom I have

great communication. It has taken care of a lot of the unecessary

worries. Right now, I have something to really worry about. I am glad

I have a good rheumatologist as I deal with these orthopedic guys.

Good luck. I don't wish this on anyone, but it will get better. Even

with years of arthritis, I have been able to achieve incredible

things and meet my goals in life...oh, and by the way, learn to pace

yourself! I need extra rest, and I let people know. Many people don't

get it, but if they value you, they will learn, especially if they

know you are not rejecting them on purpose. Now I will end by

reminding you that your brain and heart does not have arthritis. Your

body might not be cooperating at the moment, but you are still the

person you always were, and that can never be taken away from you!

Neshema

>

> Hi -

>

> I'm pretty new to this group, but I thought I would mention that I

had

> my second rheumatologist visit this afternoon. I've been on

Voltarin

> and Plaquenil for one month, now. I have had no side effects so

far.

> I did have my first case of my knuckles swelling on Dec 2nd, and

it's

> been on and off so far - the doctor did notice that. Since I am

> somewhat better, I'm going to stay on these meds until late

February

> when I go back in again.

>

> I think the hardest thing is not knowing what will happen in the

> future - will I get better or will I get worse? I know that nobody

> can answer those questions. I'm trying to remain fairly positive

> about it all. I think it's a little bizarre that my life in 2005

has

> been divided in my mind between pre-June 20th and post-June 20th

(when

> I had developed my first symptoms.)

>

> Thanks for listening.

>

[Guest guest]

Thanks, Neshema, for being so informative.

With just two visits, I think I am learning the " drill " . So far,

this doctor seems to be okay. My sister is a nurse and she said

that my doctor is an excellent rheumatologist, from what she has

seen in the hospital. I am going to try to take notes on any new

symptoms that may rear their ugly heads in the next two months. She

did say to call her office if I need stonger pain meds before my

next visit, but she hesitates to give me prednisone just yet.

Did you see an orthopedic doctor for your arthritis? I see an

orthopedic doctor for my plantar fasciitis. I occasionally get a

cortisone shot in my foot. He's the first to suggest I might have

RA and to get checked out. Oddly enough, he's also my

rheumatologist's foot doctor and she thinks he's wonderful.

Thanks for your words of encouragement.

You gotta learn to be a rheumatology patient. . . . Now I will end

by reminding you that your brain and heart does not have arthritis.

Your body might not be cooperating at the moment, but you are still

the person you always were, and that can never be taken away from

you!

Neshema

[Guest guest]

Hi, Sara-

I see orthopedic docs as needed. Right now, I am seeing one cuz I

need surgery. So, I see them when I need a procedure. My

rheumatologist does my cortisone injections quite well. However, when

I needed an injection inside my hip (not in the bursa), I had to see

the ortho and radiologist. So, I see various specialists, as needed.

Good thing you like your rheumatologist. That sounds really good that

your ortho is also your rheumatologist's doctor! As for prednisone, I

was on it for years. It is a double-edged sword. Lots of bad side

effects, but it sure does help. I only take it in short courses now.

There are so many new drugs out now, that I can avoid the steriods. I

personally do better with medrol over prednisone when I do take it.

It is great that we have more options than we used to. It is so much

better now. I remember wondering for years why nothing had come out

to help us. I remember when the COX-2s came out, my doc at the time

(I have lived a lot of places due to my career) handed me a sample,

as I was on the list to be among the first to try celebrex. Then

suddenly all these new medicines, such as Enbrel, came out at a time

when I needed them the most!

Anytime you need encouragement or have a question you think I might

be able to answer, please let me know. You will be brave, and come

out with more compassion for others and fortitude to succeed than you

ever thought possible. That is the irony you will find out about

arthritis. You will amaze yourself. Hugs, Neshema

>

> Thanks, Neshema, for being so informative.

>

> With just two visits, I think I am learning the " drill " . So far,

> this doctor seems to be okay. My sister is a nurse and she said

> that my doctor is an excellent rheumatologist, from what she has

> seen in the hospital. I am going to try to take notes on any new

> symptoms that may rear their ugly heads in the next two months.

She

> did say to call her office if I need stonger pain meds before my

> next visit, but she hesitates to give me prednisone just yet.

>

> Did you see an orthopedic doctor for your arthritis? I see an

> orthopedic doctor for my plantar fasciitis. I occasionally get a

> cortisone shot in my foot. He's the first to suggest I might have

> RA and to get checked out. Oddly enough, he's also my

> rheumatologist's foot doctor and she thinks he's wonderful.

>

> Thanks for your words of encouragement.

>

> --- In , " neshema1 " <neshema1@y...>

wrote:

> You gotta learn to be a rheumatology patient. . . . Now I will end

> by reminding you that your brain and heart does not have arthritis.

> Your body might not be cooperating at the moment, but you are

still

> the person you always were, and that can never be taken away from

> you!

>

> Neshema

>