Re: Hi- Another Confused Newbie! :)

January 16, 2004

Dear :

I am very sorry you have such a jerk for a Dr. Please try and find one who is

more human.

She sounds really terrible. I wonder how she would feel if she was in your

shoes?

Different things work for different people.

The reason she won't order pain meds is she is afraid of any hassles with the

law. She thinks she will get into trouble if she orders them and she doesn't

believe people need them enough for her to go to the trouble.

Please find someone who is more human than her. I have a great Dr. I don't

know where you live. I live in NJ. I have to admit he keeps me comfortable.

I pray there is another Dr. for you.

Sincerely, Colletti

Anjillah@...

PS: Feel free to write me if you have any questions or just want to chat.

January 16, 2004

,

Welcome! I am sorry that you had such a crummy rheumy visit. Unfortunately I

think that happens more often than not. I went through 3 different ones until i

found my current doc who I love! First rheumy basically told me to go out and

get a job waitressing so I wouldn't think about myself too much, second one

barely gave me a 3 minute appt. each time and never answered my questions and

the third wasn't bad but moved away. Sometimes I think we should speak up when

the drs. treat us that way. They are no better than we are and we wouldn't let

a stranger treat us with such disrespect! Anyway, each person is different and

different things work for them. For me, it has been a long road and much trial

and error to get the right dr. and the right meds that work. Hang in there,

. Maybe the doc was just having a bad day too but that is no excuse.

For me, i did a lot of research on my own and this group has been a Godsend!

" D. " <sedalfrey@...> wrote:

Hello all- Been lurking, enjoying the chats, information, jokes,

cheering good news and crying for the bad news. Time to introduce

myself! I am D., 39 years old, live in south Louisiana,

SAHM, 2 boys (ages 4 and 2), married to Shaun. I am really

confused/overwhelmed with all the information on treatments. I

understand the RA disease (diagnosed 5 months ago), but other than

that, have no clue.

Crummy RA Dr.! Only game in town right now. My Internist refered me

on to her. Boo! I go to see another Internist next week. The Ra

Dr.- very negative (I feel like I should just roll on over dead

according to her- no cure, no hope, she does not believe in pain

meds., etc); she is very cold and impersonnal (I don't think that I

have to be best buddies, but think that I should have some sort of

rapport)- appointments consist of 15 minutes of her yanking me around

and then tossing RX's at me. She actually rolls her eyes when I ask

a question- I do not think that asking medication side effects is

over then line. Anyway, I do not think that I will be seeing her

agian. I am currently on Relafen and Plaquenil.

Have to wonder about other treatments- according to RA Dr. " None of

that other stuff (aupuncture, supplaments, herbs, etc) works at all " .

I have IBS and take meds for it. (Anyone know of a coilation here?).

The RA meds are really messing that up! How do I know that RA Dr.

has even got the right diagnosis? She did offhand mention when I

kept asking about some finger pain near the tips, that I also had

Osteoarthritis. Asked about horrible hip pain I have been having

(like barely walking pain) and she blew it off.

All seems so surreal to me. How did you all get to the bottom of

this? Do you all like your Dr.'s and feel comfortable with them?

Oh, how I go on! Anyway, glad to 'meet' all of you. Look forward to

learning and sharing. Here's to good Health! ELizabeth

January 16, 2004

Hello ,

Welcome to the group. I am a sort of newbie too. I was diagnosied over a

year ago...and my doc moved away. I got a new doc and I understand completely

what you are going through. I am in the same situation. There is no one else

for me to see either because of my insurance.

Here are some suggestions that worked for me. Go with a list of questions and

problems. You can also fax those to your doc the day before you appnt so she

can review any concerns your have ahead of time. Make a list of medication

needs such as new prescriptions. You can also fax that list the day before.

Make sure the most important issues are discussed FIRST! You many not be

able to get everything discussed but at least your most important concerns can

get addressed.

Call her on her behavior!!!! Eye rolling..ignorring. I would tell her that

you are paying her and would like a fair share of her time. You don't

appreciate her ignorring or eye rolling. If she can't fullfil you needs then

you

need to report her to the medical board and to your insurance. You may not need

to go this far...sometimes just making the doc stop and listen is enough.

Make sure you are always early for your appnts...ask how long is you appnt

slot time! This will give you a clue.

Ask about pain meds..tell her you have tried it her way and it did not work

now you would like something for pain. If you are looking to be painfree..you

may have expectations that can not be met. Most docs seem to start out with

COX-2 like celebrex, vioxx or bextra. Then if that is not enough they add

Ultram or Ultracet.

When you first start out they don't like to add a lot of pain meds because

they want to know how the meds are really working which can me masked if you are

taking a bunch of pain meds.

If you are having problems keep things straight take someone with you to your

appnt....two pairs of ears are better than one. that person can also take

notes when the doc gives you answers.

If she goes to fast MAKE her slow down by asking her to repeat herself.

Ask for copies for you lab results....you may want copies of your records as

well.

Most of us also take meds for depression as well as sleep. Chronic pain

makes it difficult to sleep as well as cause depression. Discuss this with your

internist. If you don't have a good internal med doc..now is the time to get

one.

Keep a dairy of your symtoms, pain, meds response and feelings. I did that

for about two months...it helped and showed my doc patterns of pain. He was

able to compare that with my lab results.

May meds that treat RA have lots of side effect such as diarrhea. But stress

and lack of sleep can also cause or make diarrhea worst.

You also need frequent eye exams while on plaquineil...you doc should have

told you this...I believe its every 6 months.

I go for blood work every 2-4 weeks depending on what the previous results

looked like. I am current on Enbrel, MTX, Prednisone, Bextra, folic acid must

have while on MTX, prozac, flexeril for sleep, ultram for pain, multi-vit,

calcium with vit-D must have if on prednisone and prevacid.

I take the following suppliments which were recommended as helping from the

Arthritis Foundation: evening primrose oil, fish oil, green tea, vit-e,

magnesium, and zinc.

I use the following topical rubs: Biofreeze, Sombra and Kool n' Fit which

work really well for me.

I also sleep in nite wrist splints because I have carpel tunnel caused by my

RA.

It has been a very long road for me and I am still not stable as far as pain,

swelling and range of motion. My doc told me my last visit he thinks this is

the best I am going to get.

I would also suggest with two small children you learn to pace yourself.

Take advantage of mother's mornings out or if you can get a babysitter to watch

the kids so can rest at least two days a week.

My doc also recommended PACE or water exercise when I feel good..no classes

in my area. He also sent me for occupational and physical therapy. I went home

with some exercise bands, balls and some good ideas.

If none of this helps with your Rheumy, talk to your internist about your

concerns...sometimes they will call the rheummy and let them know you are

getting

frustrated. I had to do that and it did help.

ok..you have lots to do now! LOL I hope I have helped.

Toni in Texas

In a message dated 1/16/04 5:47:27 PM Central Standard Time,

writes:

> Message: 3

> Date: Fri, 16 Jan 2004 05:18:10 -0000

> From: " D. " <sedalfrey@...>

> Subject: Hi- Another Confused Newbie!

>

> Hello all- Been lurking, enjoying the chats, information, jokes,

> cheering good news and crying for the bad news. Time to introduce

> myself! I am D., 39 years old, live in south Louisiana,

> SAHM, 2 boys (ages 4 and 2), married to Shaun. I am really

> confused/overwhelmed with all the information on treatments. I

> understand the RA disease (diagnosed 5 months ago), but other than

> that, have no clue.

>

> Crummy RA Dr.! Only game in town right now. My Internist refered me

> on to her. Boo! I go to see another Internist next week. The Ra

> Dr.- very negative (I feel like I should just roll on over dead

> according to her- no cure, no hope, she does not believe in pain

> meds., etc); she is very cold and impersonnal (I don't think that I

> have to be best buddies, but think that I should have some sort of

> rapport)- appointments consist of 15 minutes of her yanking me around

> and then tossing RX's at me. She actually rolls her eyes when I ask

> a question- I do not think that asking medication side effects is

> over then line. Anyway, I do not think that I will be seeing her

> agian. I am currently on Relafen and Plaquenil.

>

> Have to wonder about other treatments- according to RA Dr. " None of

> that other stuff (aupuncture, supplaments, herbs, etc) works at all " .

>

> I have IBS and take meds for it. (Anyone know of a coilation here?).

> The RA meds are really messing that up! How do I know that RA Dr.

> has even got the right diagnosis? She did offhand mention when I

> kept asking about some finger pain near the tips, that I also had

> Osteoarthritis. Asked about horrible hip pain I have been having

> (like barely walking pain) and she blew it off.

>

> All seems so surreal to me. How did you all get to the bottom of

> this? Do you all like your Dr.'s and feel comfortable with them?

>

> Oh, how I go on! Anyway, glad to 'meet' all of you. Look forward to

> learning and sharing. Here's to good Health! ELizabeth

>

January 17, 2004

,

It just takes time to get to the bottom of this, to find the right

combination of meds that will control your pain and inflammation. I am

on Enbrel, and it is wonderful. I think that it has put me in remission.

It is important to find a rheumy that you like and feel comfortable

with. Mine is wonderful. I wish I could clone him and send the clone on

to you. He is very busy and very much in demand, but he still makes me

feel as if I'm his most important patient.

Good luck to you.

Sue

On Friday, January 16, 2004, at 12:18 AM, D. wrote:

> All seems so surreal to me. How did you all get to the bottom of

> this? Do you all like your Dr.'s and feel comfortable with them?

January 17, 2004

Thank you all for the Welcome and support! I am going to try a new

Internist on Tuesday. And have an appointment in March with a

Pain Management Dr. The current RA Dr. freaks me out! I have seen

her 3 times and am still not impressed. Again, she just tosses RX's

at me and states that there " are no side effects " . I beg to differ.

The very first med. she gave me, really scared me! Trilisate. Dh was

at work, just me and the 2 kids. Within 20 mintues of me taking it,

I got nauseous, pounding headache, vomiting, diarreaha, and started

to have trouble breathing. Both kids crying, me crawling into the

kitchen to get Benedryl. Took a big handful dry and just layed there

until I recovered enough to get up and clean up the mess that I had

made. Scarey. As this was a Friday, I took no more of it and

called her office on Monday morning. Had to leave message with

Recpt. Late that day Nurse called me back and said that she would

talk with Dr. FRIDAY- still no word. I called back. Same drill.

Nurse called me late that afternoon, pulls chart and tells me that

she assumes that Dr. got her note as the chart was back filed. Asked

me if I was still taking it. Huh???? Said that Dr. had left no

notes. (Ok, at the appt. on the Thursday before, Dr. said how

important it was for me to take meds.) Said that she would leave

another note. The NEXT Wed., still no word, so I call back- now

almost 2 weeks have gone by. Nurse tells me that she will talk with

Dr. Friday, my Pharmacy calls to tell me that the Dr.'s office had

just called in Bextra. Gee, Thanks for telling me RA Dr.

So, 2 weeks go by before an allergic reaction is dealt with. Is this

how your Dr.'s are? Am I just crazy? I think that having trouble

breathing rates up there and should be addressed. The next appt. I

had with the RA Dr., I asked about the allergic reaction and she just

shrugged. I have alot of anger toward this lady!

Thanks for letting me " whine " ! Think that i'll go eat some chese to

go with it. D.

> > All seems so surreal to me. How did you all get to the bottom of

> > this? Do you all like your Dr.'s and feel comfortable with them?

January 17, 2004

i am so sorry you have no other dr's to choose from. i bounced from dr to dr

until i found what was he right answer for me. a nuclear bone scan told my

story and sometimes ibs runs with the autoimmune family. i think you might want

to investigate where the next rheumatologist is. it might be worth your drive.

i find chiropractor, massage, hot baths and showers (although not good for you

skin!!) heat and ice applications (depending on the pain helps) i've tried

many of the drugs. this last combo i've been on for 14 months has worked for

me. i am on mtx injections and 5 mgs prednisone. the first couple months were

not plesent. but i went from being out of work for almost 5 years to be able to

work part time about 23 hrs a week, take care of myself including some snow

shoveling (not real smart, but ya gotta survive, right?!?!) and all the

housework as my son has moved out about 7 mos ago. it's not the greatest life,

but i

am rather content with it.i even have a small social life! i am 44 widow with

a 20 yr old son. i have reactive arthritis, oa fibro, diabetes, glaucoma.

i've had laser eye surgery both eyes, (they tried to relieve the pressure in my

eyes. tried it 2x's because i was so young (30) but it didn't work. pressure

still high with medication) carpal tunnel surgeries both hands, tarsal tunnel

surgeries on both feet. anyway thats me!! kathy in il

January 17, 2004

In a message dated 17/01/2004 17:53:30 Central Standard Time,

Matsumura_Clan@... writes:

>

> Who made the RA diagnosis? If you aren't sure that the diagnosis is

> correct, that's another reason to seek another physician, or at least

> another opinion.

>

> For a variety of reasons, there is a shortage of rheumatologists in the

> US, but there are many very good ones. Don't give up and don't settle

> for a loser.

>

, you disappoint me! Twice now you've addressed this poor rheumy issue,

and you haven't even mentioned Mayo yet!!!!!!!!!!!!! Slacker! heehee

Cary

January 17, 2004

Welcome, ! Sorry about your RA diagnosis and that you are

feeling overwhelmed and confused.

Please don't return to that rheumatologist. She doesn't sound very

professional, smart, or kind, and that isn't helping matters. I also

read about your experience with the Trilisate in your other post.

There's no excuse for the way she and her office ignored you. Just get a

copy of your record from her office and don't look back. Although it is

preferable to have an experienced rheumatologist, an excellent internist

can treat and monitor your RA.

Who made the RA diagnosis? If you aren't sure that the diagnosis is

correct, that's another reason to seek another physician, or at least

another opinion.

For a variety of reasons, there is a shortage of rheumatologists in the

US, but there are many very good ones. Don't give up and don't settle

for a loser.

[ ] Hi- Another Confused Newbie!