Re: New here Stacey

[Guest guest]

Hi Stacey:

Welcome to the group - this is a wonderful place to

come for support and information. It looks like you

have been through a lot in the last 3+ years, and I am

so sorry that you have not yet found a medication that

will help you. I think that your doctor may be

talking about Orencia, which is supposed to work

differently than the TNF inhibitors like Enbrel and

Humira. I am sure that or a, our amazingly

gifted moderators, who search the internet daily for

us to answer our questions!

I was among the lucky ones, I guess, because my RA

factor was positive and my symptoms fell right into

the RA catagory, and I had a doctor who immediately

began me on treatment which helped within the first

three months. I still had flares and fatigue, but I

was so much better than I had been when I first went

to her with hands like hot, swollen, and extremely

painful balloons. Over the years (7 now), I have gone

through other medications, and some have worked and

some haven't, and I kept trying. I was able to finally

find that Methotrexate and Enbrel are my combination -

the one that helped me best. I am able to do pretty

much what I want to, but there is still daily pain,

flares, and fatigue, but I am doing well and stable.

I also have OA, fibromyalgia, and raynaud's, and take

meds for my fibro too. These meds are here for the

rest of my life, as long as they continue working, but

if they stop, I will look for something else that

does. I take these meds not only for myself, but for

my family and friends, who love and support me, so I

can be the best I can for them. I can't afford to give

up hope, and give up and let the disease take over my

life like it has threatened to do in the past. Life

is too precious to give up on.

Do you have good support in your life? Family or

friends who understand, or at least try to? Do you

have a good relationship with your doctor? Have you

spoken with your doctor about an anti-depressant - it

sure helped me to cope - just a thought. Also, lack

of sleep can also cause our pain to increase, and

stress does as well, so maybe you could ask about

something to help you during the night, so you can

rest better. If steroids are the only thing that help

your pain, so be it, there are some here in the group

who have been on steroids for many, many years and

find it is the only way they can get a quality of

life.

I know that the pain is terrible, and will grind you

down, but don't give up hope. We are here for you,

and I can say, over the four years of being with this

group, I have learned more than I could ever have on

my own, or through my doctors. I can also come here to

vent, complain about my pain, doctors, medications,

family, everything - and get total support and

validation. We are here because we understand what

you are going through, we have all been there. Take

care - hang in there - my prayers are with you -

Kathe in CA

__________________________________________________

[Guest guest]

Kathe,

Thanks so much for the supportive letter. yes,

actually my Mother has RA-but we both feel mine is

worse than hers. My husband is wonderfully

supportive, helps me out of bed when needed or

whatever else it is I need. I also have a 1 yr old, he

is truly the light of my life and I keep questioning,

in 10 yrs, will I be able to be the mother i want to.

Im so frustrated right now that I am questioning

everything, maybe im w/the wrong type of Dr., I really

like my dr, shes very caring and concerned, its just

nothings helping.

It seems like a never ending battle that im losing.

when dr said about orencia, i thought lets do it now.

but I went to humira 1xs/weekly about 2 mos ago, so we

have to wait it out.

Everytime she gives me an antiinflammatory I want to

laugh-they have never helped!

i would greatly appreciate any info on orencia or

experiences with it.

Thanks for letting me vent!

Stacey

--- Kathe Sabetzadeh <lv2ryd@...> wrote:

>

> Hi Stacey:

>

> Welcome to the group - this is a wonderful place to

> come for support and information. It looks like you

> have been through a lot in the last 3+ years, and I

> am

> so sorry that you have not yet found a medication

> that

> will help you. I think that your doctor may be

> talking about Orencia, which is supposed to work

> differently than the TNF inhibitors like Enbrel and

> Humira. I am sure that or a, our amazingly

> gifted moderators, who search the internet daily for

> us to answer our questions!

>

> I was among the lucky ones, I guess, because my RA

> factor was positive and my symptoms fell right into

> the RA catagory, and I had a doctor who immediately

> began me on treatment which helped within the first

> three months. I still had flares and fatigue, but I

> was so much better than I had been when I first went

> to her with hands like hot, swollen, and extremely

> painful balloons. Over the years (7 now), I have

> gone

> through other medications, and some have worked and

> some haven't, and I kept trying. I was able to

> finally

> find that Methotrexate and Enbrel are my combination

> -

> the one that helped me best. I am able to do pretty

> much what I want to, but there is still daily pain,

> flares, and fatigue, but I am doing well and stable.

>

>

> I also have OA, fibromyalgia, and raynaud's, and

> take

> meds for my fibro too. These meds are here for the

> rest of my life, as long as they continue working,

> but

> if they stop, I will look for something else that

> does. I take these meds not only for myself, but for

> my family and friends, who love and support me, so I

> can be the best I can for them. I can't afford to

> give

> up hope, and give up and let the disease take over

> my

> life like it has threatened to do in the past. Life

> is too precious to give up on.

>

> Do you have good support in your life? Family or

> friends who understand, or at least try to? Do you

> have a good relationship with your doctor? Have you

> spoken with your doctor about an anti-depressant -

> it

> sure helped me to cope - just a thought. Also, lack

> of sleep can also cause our pain to increase, and

> stress does as well, so maybe you could ask about

> something to help you during the night, so you can

> rest better. If steroids are the only thing that

> help

> your pain, so be it, there are some here in the

> group

> who have been on steroids for many, many years and

> find it is the only way they can get a quality of

> life.

>

> I know that the pain is terrible, and will grind you

> down, but don't give up hope. We are here for you,

> and I can say, over the four years of being with

> this

> group, I have learned more than I could ever have on

> my own, or through my doctors. I can also come here

> to

> vent, complain about my pain, doctors, medications,

> family, everything - and get total support and

> validation. We are here because we understand what

> you are going through, we have all been there. Take

> care - hang in there - my prayers are with you -

>

> Kathe in CA

>

>

> __________________________________________________

>

[Guest guest]

Kathe,

Reading your letter to , I felt like you were speaking to me. I

experience the horrible pain, fatique, sleep disorder, depression and

most of the other known symptoms of Fibromyalgia and Osteoartritis. I

have had degenerative disc disease for 18 years, too. I have had

countless days where I just want to give up, but yes, life is too

precious. I've had several Dr.'s suspect that I have RA, but the

factor didn't show up in my blood.

I have four children and six grandchildren. My 18 year old son and my

11 year old daughter are living with me. My children are used to me

being in pain and extremely tired. So, if I mention the pain being

really bad, I seldom get a response. I guess they haven't known me to

be any different throughout their lives. I don't have a husband and

very little support.

I'm new here still and I haven't seen much about Fibro. I appreciate

your positive attitude.

Peace,

Kathy

>

> >

> > Hi Stacey:

> >

> > Welcome to the group - this is a wonderful place to

> > come for support and information. It looks like you

> > have been through a lot in the last 3+ years, and I

> > am

> > so sorry that you have not yet found a medication

> > that

> > will help you. I think that your doctor may be

> > talking about Orencia, which is supposed to work

> > differently than the TNF inhibitors like Enbrel and

> > Humira. I am sure that or a, our amazingly

> > gifted moderators, who search the internet daily for

> > us to answer our questions!

> >

> > I was among the lucky ones, I guess, because my RA

> > factor was positive and my symptoms fell right into

> > the RA catagory, and I had a doctor who immediately

> > began me on treatment which helped within the first

> > three months. I still had flares and fatigue, but I

> > was so much better than I had been when I first went

> > to her with hands like hot, swollen, and extremely

> > painful balloons. Over the years (7 now), I have

> > gone

> > through other medications, and some have worked and

> > some haven't, and I kept trying. I was able to

> > finally

> > find that Methotrexate and Enbrel are my combination

> > -

> > the one that helped me best. I am able to do pretty

> > much what I want to, but there is still daily pain,

> > flares, and fatigue, but I am doing well and stable.

> >

> >

> > I also have OA, fibromyalgia, and raynaud's, and

> > take

> > meds for my fibro too. These meds are here for the

> > rest of my life, as long as they continue working,

> > but

> > if they stop, I will look for something else that

> > does. I take these meds not only for myself, but for

> > my family and friends, who love and support me, so I

> > can be the best I can for them. I can't afford to

> > give

> > up hope, and give up and let the disease take over

> > my

> > life like it has threatened to do in the past. Life

> > is too precious to give up on.

> >

> > Do you have good support in your life? Family or

> > friends who understand, or at least try to? Do you

> > have a good relationship with your doctor? Have you

> > spoken with your doctor about an anti-depressant -

> > it

> > sure helped me to cope - just a thought. Also, lack

> > of sleep can also cause our pain to increase, and

> > stress does as well, so maybe you could ask about

> > something to help you during the night, so you can

> > rest better. If steroids are the only thing that

> > help

> > your pain, so be it, there are some here in the

> > group

> > who have been on steroids for many, many years and

> > find it is the only way they can get a quality of

> > life.

> >

> > I know that the pain is terrible, and will grind you

> > down, but don't give up hope. We are here for you,

> > and I can say, over the four years of being with

> > this

> > group, I have learned more than I could ever have on

> > my own, or through my doctors. I can also come here

> > to

> > vent, complain about my pain, doctors, medications,

> > family, everything - and get total support and

> > validation. We are here because we understand what

> > you are going through, we have all been there. Take

> > care - hang in there - my prayers are with you -

> >

> > Kathe in CA

> >

> >

> > __________________________________________________

> >