Re: RA question about remission/Maggie

[Guest guest]

Hi Maggie.....don't I know you from FSS soaping group??? My memory

sucks somedays....

That is now a concern of mine....at first....I assumed, LOL..because

I already had joint damage in a few joints when I was

diagnosed.....and the RA was in every imaginable joint I have....that

I would get the Real Stuff.....as time has gone on....I don't asssume

that anymore... Some are either Placeboes or just not working for

me....Now I'm in a rock and a hard place....Sorta....Hate to leave

something I agreed to do...(even tho I felt like I was suckered into

it)......BUT....after 3 years....what's gonna Happen to me??

That is a big problem I have with my Rheumy....he is only concered

with the RA...if something else is going wrong.....not his

concern...Even tho it stems from the RA.....I have to go to different

docs for whatever......when my Blood work shows an infection.....they

don't do the antibiotics....they send me to my GP.....in my

opinion...an antiboitic is an antibiotic.....yet I have to spend

another 200.00 dollars for someone else to write the

script.....irritates me to no end.

And you Agree to take NOTHING without their

approval...NOTHING....I've already told em off once about that...Now

I take what I NEED at the moment...and tell them what it is.....I

don't ask for permission anymore...my GP knows EVERYTHING and Every

Med....so she checks for drug interaction before she gives me

anything....like antibiotics or anything. And that's because I had a

BAD BAD ear infection.....Both Ears...and it was 8 DAYS before I

could get an approval for the antibiotic...and I told them Never

again......I'll take what I need and tell you about it later.

Sure everything is free but the visits every 6 weeks.....BUT..I

reminded of that saying..You get what you pay for

I'm not saying Don't do a study......Just take your time and LEARN

all you can about RA before you do it.....I went straight into

it...and didn't know ANYTHING about RA....the more I learn...the more

it worries me somedays, especially with this problem with my neck

now...that seems to stem from the RA.....and the Neuropathy...

Carla

--- In Rheumatoid Arthritis , Maggie <meshouse@e...>

wrote:

> Carla,

>

> My RA doctor asked about me doing a study on a new drug for RA and

one

> of my concerns was that how do I know I'm not getting placebo

because

> some of the people in the study are given placebo. I'd waste a year

and

> a half of time I could be on something that works better for me

like

> Humira, Enbrel or Remicade. I'd love to help but don't want to

waste

> anymore time fixing myself. So could be like you said that what

you are

> in the study for doesn't work for you...guess you won't know til

it's

> over? Good luck..I hope you get better.

>

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> Maggie

> http://www.4HockeyFans.com

> http://www.4FloridaHockey.com

> MSN: Maggies1429

> AOL: Maggies85

>

>

>

[Guest guest]

Hi

No, I'm not on the FSS group...not sure what it is lol.

The study information was saying that they pay for all costs pertaining

to the study and if you get sick from the study...but I was wondering

about the things you said and if I end up in the ER for something. The

papers I have say that the study doctor may not know if I'm on the

real med or the placebo. Sometimes it's hard enough getting ahold of

someone for an appt, let alone an emergency before they can treat you.

My mom had porphyria and certain drugs trigger the attacks, I'm not

willing to try something that may make this disease surface if it's

possible I can get that at some point too. Having RA is enough already.

The one I was looking at is for a year and a half...you've done one for

3 years now? How long is the study? It does say you have to follow

directions and all that, which I can understand for their info...but I

wanna be free to take a demoral or vicodin every now and then without

having to consult someone first :-) I'm very much leaning towards not

doing it even before I read your posts.

Are you thinking of quitting the study?

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Maggie

http://www.4HockeyFans.com

http://www.4FloridaHockey.com

MSN: Maggies1429

AOL: Maggies85

frogge wrote:

>Hi Maggie.....don't I know you from FSS soaping group??? My memory

>sucks somedays....

>

>That is now a concern of mine....at first....I assumed, LOL..because

>I already had joint damage in a few joints when I was

>diagnosed.....and the RA was in every imaginable joint I have....that

>I would get the Real Stuff.....as time has gone on....I don't asssume

>that anymore... Some are either Placeboes or just not working for

>me....Now I'm in a rock and a hard place....Sorta....Hate to leave

>something I agreed to do...(even tho I felt like I was suckered into

>it)......BUT....after 3 years....what's gonna Happen to me??

>

>That is a big problem I have with my Rheumy....he is only concered

>with the RA...if something else is going wrong.....not his

>concern...Even tho it stems from the RA.....I have to go to different

>docs for whatever......when my Blood work shows an infection.....they

>don't do the antibiotics....they send me to my GP.....in my

>opinion...an antiboitic is an antibiotic.....yet I have to spend

>another 200.00 dollars for someone else to write the

>script.....irritates me to no end.

>

>And you Agree to take NOTHING without their

>approval...NOTHING....I've already told em off once about that...Now

>I take what I NEED at the moment...and tell them what it is.....I

>don't ask for permission anymore...my GP knows EVERYTHING and Every

>Med....so she checks for drug interaction before she gives me

>anything....like antibiotics or anything. And that's because I had a

>BAD BAD ear infection.....Both Ears...and it was 8 DAYS before I

>could get an approval for the antibiotic...and I told them Never

>again......I'll take what I need and tell you about it later.

>

>Sure everything is free but the visits every 6 weeks.....BUT..I

>reminded of that saying..You get what you pay for

>

>I'm not saying Don't do a study......Just take your time and LEARN

>all you can about RA before you do it.....I went straight into

>it...and didn't know ANYTHING about RA....the more I learn...the more

>it worries me somedays, especially with this problem with my neck

>now...that seems to stem from the RA.....and the Neuropathy...

>

>Carla

>

>

>

>

>

[Guest guest]

Ahhhh...I'm thinking of another Maggie then FSS is a soapmakers

group.....

That's what I thought on the visits too...but they bill my Ins and

me....(@@). Plus they don't pay for anything if you get sick from

the study......but say they will make sure you get help...LOL. The

Study I'm in is a 3 year study...and I've been in it for almost a

year now.

I think about leaving it.....but....with 2 daughters that could get

RA...my Mom had RA......I have to hope that MAYBE with my blood

work....I volunteered for DNA and Gene Study

also......MAYBE...they'll find a cure...and my Girls won't have to

suffer like I do with it......so I stay..and Hope..that my blood will

help them find an answer....every 12 weeks..they draw several vials

to send it to study. So my price is low if it helps my children in

the long run......ya never know when they'll figure it out....and if

it doesn't help me.....someone else will be helped out

someday.....that's all I can Hope for....

I do get frustrated, as you can tell....and this is a good place to

talk about it......But I will stay and pray.....and it'll work out

for someone in the long run. They know I'm gonna do what I need

to do for any given problem now tho......but my GP is great...so she

makes sure nothing is gonna effect anything else..unless it's a

fluke. I take Darvocet and Hydrocodone for pain ..it helps...and

I've learned to Laugh at the weird things that happen....

I had to go for a Brain MRI...and when I got there..they asked me Why

I was having it....I told the Tech....Well, Apparently I've lost my

mind and Ya'll are supposed to find it hahah...he almost fell off

his stool I learned several months ago....if I didn't laugh at

these things...and crack my jokes about it....I'd never make it.

Laughter is my coping strategy with all this. screaming was just

scaring my kids ..(@@).

Carla

--- In Rheumatoid Arthritis , Maggie <meshouse@e...>

wrote:

> Hi

>

> No, I'm not on the FSS group...not sure what it is lol.

>

> The study information was saying that they pay for all costs

pertaining

> to the study and if you get sick from the study...but I was

wondering

> about the things you said and if I end up in the ER for something.

The

> papers I have say that the study doctor may not know if I'm on

the

> real med or the placebo. Sometimes it's hard enough getting ahold

of

> someone for an appt, let alone an emergency before they can treat

you.

> My mom had porphyria and certain drugs trigger the attacks, I'm not

> willing to try something that may make this disease surface if it's

> possible I can get that at some point too. Having RA is enough

already.

>

> The one I was looking at is for a year and a half...you've done one

for

> 3 years now? How long is the study? It does say you have to follow

> directions and all that, which I can understand for their

info...but I

> wanna be free to take a demoral or vicodin every now and then

without

> having to consult someone first :-) I'm very much leaning towards

not

> doing it even before I read your posts.

>

> Are you thinking of quitting the study?

>

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> Maggie

> http://www.4HockeyFans.com

> http://www.4FloridaHockey.com

> MSN: Maggies1429

> AOL: Maggies85

>

>

[Guest guest]

Good for you Carla! You make a lot of good points on plugging thru with

the study. I wish I had your outlook and guts to do something like that

to help everyone...but at 45 I don't have the want to do it...now if I

was in my 30's again..maybe I would.

I wish you lots of luck and better health! This is a good place to rant,

rave and let loose...if you need to you can email me off the list to

talk :-) I admire you for what you are doing.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Maggie

http://www.4HockeyFans.com

http://www.4FloridaHockey.com

MSN: Maggies1429

AOL: Maggies85

frogge wrote:

>Ahhhh...I'm thinking of another Maggie then FSS is a soapmakers

>group.....

>

>That's what I thought on the visits too...but they bill my Ins and

>me....(@@). Plus they don't pay for anything if you get sick from

>the study......but say they will make sure you get help...LOL. The

>Study I'm in is a 3 year study...and I've been in it for almost a

>year now.

>

>I think about leaving it.....but....with 2 daughters that could get

>RA...my Mom had RA......I have to hope that MAYBE with my blood

>work....I volunteered for DNA and Gene Study

>also......MAYBE...they'll find a cure...and my Girls won't have to

>suffer like I do with it......so I stay..and Hope..that my blood will

>help them find an answer....every 12 weeks..they draw several vials

>to send it to study. So my price is low if it helps my children in

>the long run......ya never know when they'll figure it out....and if

>it doesn't help me.....someone else will be helped out

>someday.....that's all I can Hope for....

>

>I do get frustrated, as you can tell....and this is a good place to

>talk about it......But I will stay and pray.....and it'll work out

>for someone in the long run. They know I'm gonna do what I need

>to do for any given problem now tho......but my GP is great...so she

>makes sure nothing is gonna effect anything else..unless it's a

>fluke. I take Darvocet and Hydrocodone for pain ..it helps...and

>I've learned to Laugh at the weird things that happen....

>

>I had to go for a Brain MRI...and when I got there..they asked me Why

>I was having it....I told the Tech....Well, Apparently I've lost my

>mind and Ya'll are supposed to find it hahah...he almost fell off

>his stool I learned several months ago....if I didn't laugh at

>these things...and crack my jokes about it....I'd never make it.

>Laughter is my coping strategy with all this. screaming was just

>scaring my kids ..(@@).

>

>Carla

>

>

>

>

>

[Guest guest]

I just hope it helps someone someday. I did get my papers back out to

read over......LOL.....found one paragraph..where they are supposed

to pay me 20.00 a visit for gas ....hahah....they haven't done that

yet.......believe I'll bring that up next week ....gas is so

high...and I drive 90 miles RT to get there ...every 6 weeks....come

home and crash and burn for a day or 2 from the drive.

You do what's best for YOU....don't be pressured into anything....

Carla

--- In Rheumatoid Arthritis , Maggie <meshouse@e...>

wrote:

> Good for you Carla! You make a lot of good points on plugging thru

with

> the study. I wish I had your outlook and guts to do something like

that

> to help everyone...but at 45 I don't have the want to do it...now

if I

> was in my 30's again..maybe I would.

>

> I wish you lots of luck and better health! This is a good place to

rant,

> rave and let loose...if you need to you can email me off the list

to

> talk :-) I admire you for what you are doing.

>

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> Maggie

> http://www.4HockeyFans.com

> http://www.4FloridaHockey.com

> MSN: Maggies1429

> AOL: Maggies85

>

[Guest guest]

Yea, make sure you collect that money hehe. The papers I have say that

if I stick thru the study for a year and a half I'd get $775....and if I

were to last less than that, if I remember right it says $50. a month er

something.

Good luck Carla!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Maggie

http://www.4HockeyFans.com

http://www.4FloridaHockey.com

MSN: Maggies1429

AOL: Maggies85

frogge wrote:

>I just hope it helps someone someday. I did get my papers back out to

>read over......LOL.....found one paragraph..where they are supposed

>to pay me 20.00 a visit for gas ....hahah....they haven't done that

>yet.......believe I'll bring that up next week ....gas is so

>high...and I drive 90 miles RT to get there ...every 6 weeks....come

>home and crash and burn for a day or 2 from the drive.

>

>You do what's best for YOU....don't be pressured into anything....

>

>Carla

>

>

>

>

>

>