Re: Re: another new person to the group Sandy

[Guest guest]

Hi Sandy:

Welcome to the group - you will find a lot of very

caring and supportive people here, and much good

information.

I, too, have had RA for 8 years now. I also had

images of myself in a wheelchair (my grandma had RA

and she was crippled and in a wheelchair by the end of

her life), but over the years, I have been on various

medications, and have finally found that I am doing

well with Mobic, Methotrexate, Enbrel and Ultracet.

My RA is well controlled on this medication, but, like

you, there is always some degree of pain which varies

with the weather and with activity, but I can live

with it. The Fibro is what's causing the most pain

for me right now.

I love the effect of Prednisone too, but six years is

a very long time to be on it. I only go on it when I

really, really need it, and keep it to a minimun, but

it is a wonder drug for the pain, and I am always

tempted to keep going on it.

There are some members here who are on Humira who can

help you with that. I am on Enbrel, which I inject at

home myself, like you do with the Humira. I hope that

the Humira does you as much good as Enbrel has for me.

Wow, a doctor who has RA herself. She should really

be able to emphathize with what her patients go

through. Sorry for her that she has to though.

You gave some really good advice for other newbies -

they should always remain positive - there is life

after RA, so to speak, maybe not the life you had

imagined, but a good life is still there in your

future, but you gotta fight for it.

Kathe in CA

--- sandradee_200340 <mrssdaniels2@...>

wrote:

>

>

>

> Hi Everyone,

>

> My name is Sandy and I have just been reading up on

> some of the posts

> here, and feel that I could have written many. I am

> (in 2 days I will

> be) 43 and have had RA for about 8 years now. I

> have just recently

> changed Rhum. Drs. because my Dr. had to quit, and I

> love this new Dr.

> I started out as many here have, with the initial

> diagnosis, which

> scared the living daylights out of me. I was sure I

> was going to either

> A. Die or B. Become a cripple in a wheelchair. At

> first it hurt

> soooooooooo bad, but in time, the Dr. tried and

> found the correct

> medications for me to be 'comfortable.' I am never

> without pain, but at

> times it is manageable at best. I have been on

> Prednisone for about 6

> years now...that and Diclofonec, aka Voltaran (I

> think that is the

> spelling). My new Dr. has me off the Diclofonec,

> down to 5 mg. of

> Prednisone (Gosh I love that stuff!) and I have just

> finished my first

> injection of Humira. (That was scary, but I did

> it!) I was wondering

> if anyone else here is on Humira, and how it is

> helping them, if it is.

> My own Dr. is on it as she has some pretty wicked RA

> herself.

>

> I also want to tell those who have been recently

> diagnosed, especially

> those with small childeren who depend on them, to

> HANG IN THERE and work

> closely with your Dr. to get on the right meds. It

> takes time, and

> patience to say the least. If you feel like your

> meds aren't working,

> call the Nurse, they are (usually) very

> understanding and caring, and

> they know what you are going through. I remember

> wanting to die, and I

> would get soooooooo bad, then I would call the Drs

> office and the nurse

> would listen to me crying, and we would work on

> another solution. It is

> a trial and error disease, but it can become

> 'liveable' if you stay on

> top of it.

>

> One more thing...Don't listen to the horror

> stories...they will just

> intensify your fear and for nothing!

>

> Sorry this became a novel, but I soooooooooo feel

> the pain here. And

> let me know about the Humira thing please.

>

>

>

> Sandy

>

>

>

> > >

> > > I am new to the group and new to the wonderful

> world of autoimmune

> > > disease. I still have not been definitively

> diagnosed but it

> > > currently seems the suspicion is RA or lupus.

> All I know is that

> > my

> > > body is in a world of hurt, I feel angry at

> people and the world

> > for

> > > not understanding, and afraid that my life is

> going to change

> > > irreversibly for the worse. I have had pain here

> and there since

> > > last year with a flare in the fall and one big

> flare currently.

> > My

> > > blood work pretty much comes back normal except

> for my sed rate

> > going

> > > up. Indomethacin worked for a while but now I am

> on prednisone

> > and I

> > > start methotrexate next week. I basically feel

> confused about

> > what

> > > is wrong with me, why nobody can tell me what is

> wrong with me and

> > > what I should do about it. I am at the point

> with the pain that I

> > > just want it to go away but the bigger questions

> of what this all

> > > means for me, my husband and what I hoped would

> be our long

> > healthy

> > > life together. I'm 30 years old, I haven't had

> children yet and

> > there

> > > are so many other future things that I feel like

> are disappearing

> > > from the realm of possibility.

> > >

> > > Sorry for the drama but things feel hopeless

> right now. Can

> > anybody

> > > tell me what I can expect from all this? How do

> you deal with the

> > > pain? How do you deal with spouses, family and

> friends moving a

> > > whole lot faster than you? How do you deal with

> all this

> > medication?

> > >

> > > Thanks,

> > >

> > >

> >

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

Kathe

" To ride a horse is to borrow freedom. "

__________________________________________________

[Guest guest]

Sandy

I take humiria myself, i inject one a week, its not so bad , really!

What a surprise, I also have a rheumy with RA, she really understands what you

are talking about, because she has been there. The downside is she in only in

her office three days a week, but she is in contact with my internist, who has a

good grasp of how RA effects your general health. I f you have humiria questions

you would like to ask my email is bizzare48@....

What part of the country do you live in? in WI

Kathe Sabetzadeh <lv2ryd@...> wrote:

Hi Sandy:

Welcome to the group - you will find a lot of very

caring and supportive people here, and much good

information.

I, too, have had RA for 8 years now. I also had

images of myself in a wheelchair (my grandma had RA

and she was crippled and in a wheelchair by the end of

her life), but over the years, I have been on various

medications, and have finally found that I am doing

well with Mobic, Methotrexate, Enbrel and Ultracet.

My RA is well controlled on this medication, but, like

you, there is always some degree of pain which varies

with the weather and with activity, but I can live

with it. The Fibro is what's causing the most pain

for me right now.

I love the effect of Prednisone too, but six years is

a very long time to be on it. I only go on it when I

really, really need it, and keep it to a minimun, but

it is a wonder drug for the pain, and I am always

tempted to keep going on it.

There are some members here who are on Humira who can

help you with that. I am on Enbrel, which I inject at

home myself, like you do with the Humira. I hope that

the Humira does you as much good as Enbrel has for me.

Wow, a doctor who has RA herself. She should really

be able to emphathize with what her patients go

through. Sorry for her that she has to though.

You gave some really good advice for other newbies -

they should always remain positive - there is life

after RA, so to speak, maybe not the life you had

imagined, but a good life is still there in your

future, but you gotta fight for it.

Kathe in CA

--- sandradee_200340 <mrssdaniels2@...>

wrote:

>

>

>

> Hi Everyone,

>

> My name is Sandy and I have just been reading up on

> some of the posts

> here, and feel that I could have written many. I am

> (in 2 days I will

> be) 43 and have had RA for about 8 years now. I

> have just recently

> changed Rhum. Drs. because my Dr. had to quit, and I

> love this new Dr.

> I started out as many here have, with the initial

> diagnosis, which

> scared the living daylights out of me. I was sure I

> was going to either

> A. Die or B. Become a cripple in a wheelchair. At

> first it hurt

> soooooooooo bad, but in time, the Dr. tried and

> found the correct

> medications for me to be 'comfortable.' I am never

> without pain, but at

> times it is manageable at best. I have been on

> Prednisone for about 6

> years now...that and Diclofonec, aka Voltaran (I

> think that is the

> spelling). My new Dr. has me off the Diclofonec,

> down to 5 mg. of

> Prednisone (Gosh I love that stuff!) and I have just

> finished my first

> injection of Humira. (That was scary, but I did

> it!) I was wondering

> if anyone else here is on Humira, and how it is

> helping them, if it is.

> My own Dr. is on it as she has some pretty wicked RA

> herself.

>

> I also want to tell those who have been recently

> diagnosed, especially

> those with small childeren who depend on them, to

> HANG IN THERE and work

> closely with your Dr. to get on the right meds. It

> takes time, and

> patience to say the least. If you feel like your

> meds aren't working,

> call the Nurse, they are (usually) very

> understanding and caring, and

> they know what you are going through. I remember

> wanting to die, and I

> would get soooooooo bad, then I would call the Drs

> office and the nurse

> would listen to me crying, and we would work on

> another solution. It is

> a trial and error disease, but it can become

> 'liveable' if you stay on

> top of it.

>

> One more thing...Don't listen to the horror

> stories...they will just

> intensify your fear and for nothing!

>

> Sorry this became a novel, but I soooooooooo feel

> the pain here. And

> let me know about the Humira thing please.

>

>

>

> Sandy

>

>

>

> > >

> > > I am new to the group and new to the wonderful

> world of autoimmune

> > > disease. I still have not been definitively

> diagnosed but it

> > > currently seems the suspicion is RA or lupus.

> All I know is that

> > my

> > > body is in a world of hurt, I feel angry at

> people and the world

> > for

> > > not understanding, and afraid that my life is

> going to change

> > > irreversibly for the worse. I have had pain here

> and there since

> > > last year with a flare in the fall and one big

> flare currently.

> > My

> > > blood work pretty much comes back normal except

> for my sed rate

> > going

> > > up. Indomethacin worked for a while but now I am

> on prednisone

> > and I

> > > start methotrexate next week. I basically feel

> confused about

> > what

> > > is wrong with me, why nobody can tell me what is

> wrong with me and

> > > what I should do about it. I am at the point

> with the pain that I

> > > just want it to go away but the bigger questions

> of what this all

> > > means for me, my husband and what I hoped would

> be our long

> > healthy

> > > life together. I'm 30 years old, I haven't had

> children yet and

> > there

> > > are so many other future things that I feel like

> are disappearing

> > > from the realm of possibility.

> > >

> > > Sorry for the drama but things feel hopeless

> right now. Can

> > anybody

> > > tell me what I can expect from all this? How do

> you deal with the

> > > pain? How do you deal with spouses, family and

> friends moving a

> > > whole lot faster than you? How do you deal with

> all this

> > medication?

> > >

> > > Thanks,

> > >

> > >

> >

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

Kathe

" To ride a horse is to borrow freedom. "

__________________________________________________