Re: Doctors appointment today

[Guest guest]

Dearest , thank you for posting about your visit today and I would say

your doctor was very kind and compassionate with a two hour visit. I will

wish the best for whatever medication they try for you.

I do believe sometimes at least 4 or 5 lbs of weight can be water, oh heck,

I wish we were all floating in a stream, could get out dry off and be our

skinny selves lol.

Take care and be gentle with yourself about everything. Till soon, Melt

----- Original Message -----

From: " A. Matera " <cjlabbe01@...>

...... well, I made my doctors appointment today, I was there for over 2

hours with him .......

......I was very upset when I found out that I gained 10 pounds in a month!

[Guest guest]

I am starting on a full blown dose of Arava tomorrow.

> Has anyone tried this? He says that the diarrhea should be

horrible with

> this, and to tell him of any bad symptoms right away.

Hello Sue #2

I was on Arava a few years ago. It's another med like mtx. It started

working for me about 6-8 weeks after I started, but guess what. It

didn't like me. But I had the problems shortly after I started it and

never thought the Arava was causing it. I had problems with numbing

and tingling feelings in my hands and feet. There are a few symptoms

you have to watch out for. I Can't remember what all the symptoms are

but you can find all the info on any med that you ever take or meds

you are getting ready to start. I use this website all the time and

always tell people about it. Now even by doctors use it to look up

meds fast. WWW.RXLIST.COM

Until next time take care

" We are all normal, Just some of us have more bumps in our lives then

others "

[Guest guest]

Dear Sue,

Your doc sounds like he is really trying to do what

he can to get you on the Enbrel. To take the time

to read the letters you copied and took in really

impresses me! I can just picture the look on the

face of the rhuemy I used to have if I did that! He

would have looked at me like.. " you what?..expect

*me* to read something from people who aren't

doctor's?..get real! " He was an ass. It took me

so many years to finally realize the truth of it.

Please keep us updated how the Arava goes.

About the weight issue. I agree with Patty, in

most cases it's a lot of excess water (fluid)

and not " fat " at all.

Keep your sense of humor, it will get you through

the rough times.

Love you,

~~tricia~~

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*

Subject: doctors appointment today

Hello Friends,

well, I made my doctors appointment today, up at the University Of

Connecticut. Yes...I went in two feet of snow! Boy, did we get hammered

here. It was unbelievable. I haven't seen this much snow since the New

England Blizzard of 1978.

My rheumy felt bad about the Enbrel and we talked about it a lot, and he

doesn't want me depressed or upset about it. He is truly fighting for me,

and is getting right on it again tomorrow. I received my denial letter for

the Enbrel in the mail today and brought it with me. I also printed off

EVERYONE'S letters that were addressed to me about the Enbrel and your

stories. There are so many times that I dislike my rheumy, but there are

many times, where I think he is very good. He definitely does take the time

to listen to what I have to say, and when I bring stuff from our web-site,

he always takes the time to read it. He read Jens story and Carmen's story

Kate and Marilyn's about Enbrel. I printed off everyone's comments and he

read them all. I printed off the page that Kate suggested about the Enbrel

site. He felt bad and has dealt with them before about situations like this

and he says that they are very tough, and really won't give it to anyone

unless they have RA. He says they are very tough on this and want to give

it to you when you have joint damage, and until then, they will not, but he

did say that they just approved it for another type of RA but I don't

remember which one that he said. He honestly appreciated everyone's

comments and ideas, but said that I shouldn't have to fight state reps and

write a ton of letters. He wants these insurance companies to stop all of

this, and start listening to the doctors and patients. Anyway, he does

have one of those large meetings tomorrow with the other 6 rheumy's and my

case goes to their attention, like it does every month, and he will be

discussing it with them, and asking for more advice, but promises to fight

this, starting tomorrow morning. He did say that he will not put down that

I have RA just to get Enbrel, because he doesn't want to get caught in a lie

and lose his license, but wants them to wake up and learn about Stills

Disease and how damaging it is. I want to tell all of you whom sent me

posts...thank you dearly for your comments and advice. As always, it is

very helpful for me and my doctor. He seems to really enjoy what I bring

him, and he is very aware of our site. He thinks it is a tremendous place

that I am at. The only thing I can really put him down about is not

returning phone calls. It seems that a lot of doctors are so bad at that.

I meant to bring it up to him today, but I was there for over 2 hours with

him and at the end of the visit, I totally forgot. Anyway, until the

Enbrel comes through..I am starting on a full blown dose of Arava tomorrow.

Has anyone tried this? He says that the diarrhea should be horrible with

this, and to tell him of any bad symptoms right away. I am still at 25mg

of prednisone, 50 mg of amptytriptylene (sorry, bad spelling of that one),

folic acid, and now prevacid for my acid reflux disease and lodeen (spelling

again...sorry)..for my migraine headaches, my injectable methotrexate once a

week. He is hoping that Arava might hold me over for a little while until

we can try and get Enbrel again, if not...we might try Remicade, but he and

I both do not agree on Kineret yet. I am afraid to try this and so is he.

I had x-rays of my left shoulder today, because my left arm seems to be

going numb at times from the pain. He x-rayed my left wrist and hand,

right wrist and hand, as well as ankles and feet. He is looking for the

slightest joint damage that he can send to Enbrel as back up power, so he

was actually hoping to find something. I have a lot of pain in my left

shoulder lately, and it has become very bothersome as well as the wrist, so

I guess that I am hoping that something positive will come out of this also.

I know that sounds horrible, but I need something else. He was going to

inject my left shoulder with cortisone today, but then decided not to

because of the Arava. I stressed to him, that I think that I have been

very depressed and highly stressed, and this is a big one for me to admit

this to a doctor. I am very, very stubborn about this. It's a big thing

for me to admit that I think I am depressed, but the last few months have

been a lot to handle, and the death of my beloved dog this week has just

sunk me lower. I am really having a very hard time with this still. The

pain is just horrible. My heart is so broken over him. I was very upset

when I found out that I gained 10 pounds in a month! I now weight 164.

Last month, I weighed 154 exactly at my last visit, so we were a little

concerned over the sudden weight gain and he will watch that closely. Bob

stressed to him today, that he was worried that I wasn't eating enough,

because I have been so stressed. I have been eating fruit and trying to

exercise just a little at night to make myself feel somewhat better, and

since I am taking the boys on vacation in six weeks, I have been trying to

lose the extra weight, but it is going in the other direction, so that had

me upset. So there it is about my appointment today. I hope that

everyone is well and remember how much I love all of you, and I just wanted

to thank ALL of you for just being there this past week for me about my dog.

It truly means the world to me. Thank you for keeping me going. Much

love and hugs as always.

Love, Sue #2

..

[Guest guest]

A. Matera wrote:

> Hello Friends,

> well, I made my doctors appointment today, up at the University Of

> Connecticut.

Lots of hugs to you too Sue, and I am so glad that your doctor spent so

much time with you today. It really helps when they will listen enough

and truly try to help us find so relief! Sounds like he is a keeper.

You take good care of your self, Louise.

[Guest guest]

A. Matera wrote:

> Hello Friends,

> well, I made my doctors appointment today, up at the University Of

> Connecticut.

Lots of hugs to you too Sue, and I am so glad that your doctor spent so

much time with you today. It really helps when they will listen enough

and truly try to help us find so relief! Sounds like he is a keeper.

You take good care of your self, Louise.