Re: Remicade & Blood results

February 22, 2003

Hi Judy,

When I had my first infusion of Remicade, I left the hospital feeling much

better. After a couple of days I was back where I started and then I got

very sick and wound up in the hospital. I was very disappointed, never went

back for any more infusions and then changed to Enbrel which, so far, has

been good to me. No headaches like some of us here complain of. I've heard

of very good results with Remicade so I don't know how to advise you when I

didn't have them. (

Let us know what your doctor has to say.

xxoo

Ca. Carmen

February 22, 2003

Carmen..

Thanks for the reply. I have been thinking of changing to the Enbrel

but my primary dr wants to stay with remicade for at least a total

of 4 infusions. Thanks for listening.

Judy, Collegeville, PA

> Hi Judy,

> When I had my first infusion of Remicade, I left the hospital

feeling much

> better. After a couple of days I was back where I started and

then I got

> very sick and wound up in the hospital. I was very disappointed,

never went

> back for any more infusions and then changed to Enbrel which, so

far, has

> been good to me. No headaches like some of us here complain of.

I've heard

> of very good results with Remicade so I don't know how to advise

you when I

> didn't have them. (

> Let us know what your doctor has to say.

> xxoo

> Ca. Carmen

>

February 23, 2003

Thanks Marilyn,

I will try an be patience. Sometimes it hard with all the pain.

I appreciate everyones imput.

Judy, Collegeville, PA

>

> Judy, sometimes Remicade takes a while to get into your system

while others

> seem to reap the benefits from it right away. While I was on it

it always

> took a few days before i would feel better but it would only last

so long

> and I be just dying while I waited for my next infusion. I'm now

on Enbrel,

> not sure how effective I'm finding it though. Anyway, you might

want to at

> least wait until you are through the loading dose which I think is

four

> infusions and then wait and see how you are feeling. I too did

not take

> this with MTX but was taking Arava at the time.

>

> Hope you notice a change real soon.

>

> Marilyn

> Canada

>

February 24, 2003

Thanks Kathy,

I so glad I'm not alone. I thought that maybe I was crazy and I

should be feeling better. Hope you find a dr that is more

understanding. Maybe we throw him in the garbage forget the door.

Take care. Hope you have a pain free day.

Judy, Collegevillen, PA

> Dear Judy, I have the same problem. I am told my lab

> work looks good, but I am always in constant pain. My

> Doctor states, your joints are not swollen your not in

> pain. Or else he will say your too heavy that's why

> your in pain.I just think he is a big fool.... He also

> on a regular basis tells me that Still's disease is a

> garbage can disease, if we can't figure out what a

> patient has we throw them in there. He is my third Dr.

> and about to go out the door with the other two. I

> wish I could find a Dr. who believed that Still's

> disease,lupus and RA have the same mother. Hopefully

> the Remicade will start doing a better job for you,

> they say it takes some time. Take care kathyv in

> Minnesota.

February 24, 2003

Hi Kathy,

A " garbage can ' disease hey??? All in our mind??

As Marty Man would say " Stills Stinks! " and the

disease can sort of " drive us nuts. "

These doctor's who have such an attitude about the

disease and the people who have it, need a thourough

mental enema. My old rhuemy included!

~~tricia~~

Wisc.

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Subject: Re: Remicade & Blood results

Dear Judy, I have the same problem. I am told my lab

work looks good, but I am always in constant pain. My

Doctor states, your joints are not swollen your not in

pain. Or else he will say your too heavy that's why

your in pain.I just think he is a big fool.... He also

on a regular basis tells me that Still's disease is a

garbage can disease, if we can't figure out what a

patient has we throw them in there. He is my third Dr.

and about to go out the door with the other two. I

wish I could find a Dr. who believed that S

--- " Judy Moyer <moyer@...> "

<moyer@...>

..

February 24, 2003

Thanks Louise,

It is so " dehumanizing " when a doctor puts a patient

down. Yes, I do know, and never again will I allow a

doctor to make me feel like I am nothing, and I know

nothing (about disease, meds. and even my own

body and pain etc) never again! After all, where

are they getting their fancy new cars, vacations,

and other goodies from??? Their patients, and

their patients insurances of course! There are some

very good doctor's out there, and they earn every

cent they take in, but there also are (so it seems)

many who need a good beating, and some lessons

on doctor/patient relationships. Ohhhh..grrrrrr..I am

on a roll now.....

Louise, sweety..I look forward to visiting with you and your

dear Greg sometime this year. Maybe Vegas again?

Our 27 year old (soon to be divorced) son wants to

come with us. He has never been on a plane, nor to

Vegas, and he'd like to meet some of the folks in my

support group.

Your Wisconsin friend,

~~tricia~

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Subject: Re: Remicade & Blood results

You are absolutely right Tricia about some of these doctors! They have

caused more pain, agony and stress that they ever relieve, and you of

all people have had more than your share of that. Kathy and Judy, this

lady knows her stuff!! It seems like a large percentage (dare I guess

35%) of our dialog within this group concerns the ignorance, lack of

concern and plain stupidity of many doctors. I like your mental enema

idea Tricia, he he. Take care, Louise.

>

..

February 25, 2003

I agree with you Tricia!! I am glad you have " drawn you line in the

sand " so to speak! Some doctors need much more training in doctor

patient relationships, they hurt too many people who are already in pain.

I am going to start plans for a reunion/conference again this year as

soon as I get back from the wedding. I am struggling right now to stay

healthy, the doctor thinks I should try a " burst and tapper " of

prednisone, but I am trying the " sleep a lot method instead " , lol. I

wanted to ask Jay to perhaps do a survey again or a vote about

location, That was a good starting place last year, haven't gotten

around to it yet. It was a wonderful opportunity for us to learn and

visit, everyone came away with such good feelings. It was great to

have such nice rooms at such a good price and lots of entertainment!

Vegas does a lot of things right. Maybe you could start a little talk

about times, places and ideas????

We would sure love to meet your son also Tricia, you take care, Louise.

TLC wrote:

>

> Thanks Louise,

>

> It is so " dehumanizing " when a doctor puts a patient

> down. Yes, I do know, and never again will I allow a

> doctor to make me feel like I am nothing, and I know

> nothing (about disease, meds. and even my own

> body and pain etc) never again! After all, where

> are they getting their fancy new cars, vacations,

> and other goodies from??? Their patients, and

> their patients insurances of course! There are some

> very good doctor's out there, and they earn every

> cent they take in, but there also are (so it seems)

> many who need a good beating, and some lessons

> on doctor/patient relationships. Ohhhh..grrrrrr..I am

> on a roll now.....

>

> Louise, sweety..I look forward to visiting with you and your

> dear Greg sometime this year. Maybe Vegas again?

> Our 27 year old (soon to be divorced) son wants to

> come with us. He has never been on a plane, nor to

> Vegas, and he'd like to meet some of the folks in my

> support group.

>

> Your Wisconsin friend,

> ~~tricia~

>

> *****************************************************************************

> ****************

>

> Subject: Re: Remicade & Blood results

>

> You are absolutely right Tricia about some of these doctors! They have

> caused more pain, agony and stress that they ever relieve, and you of

> all people have had more than your share of that. Kathy and Judy, this

> lady knows her stuff!! It seems like a large percentage (dare I guess

> 35%) of our dialog within this group concerns the ignorance, lack of

> concern and plain stupidity of many doctors. I like your mental enema

> idea Tricia, he he. Take care, Louise.

>

> >

>

> .

>

February 26, 2003

Louise,

I have no preference as to where the " second annual

Stilligans Conference " is held. My husband, son and

myself will probably take a few days and go to Vegas

regardless. (our son) wants to meet some of my

Stillgan friends, so he will be happy to go wherever the

majority decides. He is a great son! He really cares for

people who struggle with illnesses...he has lived with

the " dragon " beating up on his mom for as long as he

can remember.

Please get enough rest Louise...it sounds as if you are

doing what you know you should. You & Greg take care,

and we shall talk again before the wedding...I think...when

is it again??

Your friend, tricia

Wisconsin (heard a " Spring " bird singing this morning!)

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