Re: Newly diagnosed RA patient

[Guest guest]

So sorry to hear that MTX did not work. Are you doing humira in

addition to mtx? I started on mtx and prednisone, but it alone was

not enough. Then plaquenil was added, still not enough. Then enbrel

was added, this works! In the meantime I feel like I have my own

pharmacy! I am being weaned off prednisone. I started at 15 mg,

and I'm down to 6. Every 2 mos we go down 1 more. I do very well

most the time, just tired more than I used to be. There are some

things I've given up doing, like fine needlework, cross stitching,

and crochet. I like cooking, but I do take breaks while preparing

fancy meals. Hopefully you will find the right meds that work for

you & you can feel mostly normal again.

>

> I am a newly diagnosed RA patient and it is really hard. My first

3

> months of methotraxate did not work so now I am just starting the

first

> stage of Humira. I am in extreme pain and really dont see any end

in

> sight. I was hoping to get lots of information and some support to

> help me deal with all of this. My family is very supportive but I

need

> people who have been thru it and have reached the other side. The

side

> where you feel human again and can do things of a basic nature. I

just

> need something to look forward to again. Every step I have been

> looking forward to hasnt worked out very well. Any help anyone

could

> give me would be great. I pray for everyone who has this and worse

as

> I know others pray for me. Thanks so much to all.

>

[Guest guest]

Hi :

     Sure hope you find the best meds. soon that will work for you.

Unfortunately, it does take time to get the right combination.  Once you do, you

will start to feel so much better.

     I too, did so many things with my hands. I am slowly getting off the Pred.

and doing very well so far.  I am a folk art painter, and will start tomorrow

and see how it goes.  I am excited to paint again, and will start slowly. 

     Yes, my cabinet of meds. looks like a pill factory too. I graduated from 2

pills a day to

so many I lost count.!!!!!!!  Gotta laugh sometimes at the volume...... never

thought I would come to this!!!!!

     I pray you will be feeling better soon.

Hugs,

Barbara

From: Jeanette <jhkerch@...>

Subject: [ ] Re: Newly diagnosed RA patient

Date: Sunday, July 20, 2008, 5:17 AM

So sorry to hear that MTX did not work. Are you doing humira in

addition to mtx? I started on mtx and prednisone, but it alone was

not enough. Then plaquenil was added, still not enough. Then enbrel

was added, this works! In the meantime I feel like I have my own

pharmacy! I am being weaned off prednisone. I started at 15 mg,

and I'm down to 6. Every 2 mos we go down 1 more. I do very well

most the time, just tired more than I used to be. There are some

things I've given up doing, like fine needlework, cross stitching,

and crochet. I like cooking, but I do take breaks while preparing

fancy meals. Hopefully you will find the right meds that work for

you & you can feel mostly normal again.

>

> I am a newly diagnosed RA patient and it is really hard. My first

3

> months of methotraxate did not work so now I am just starting the

first

> stage of Humira. I am in extreme pain and really dont see any end

in

> sight. I was hoping to get lots of information and some support to

> help me deal with all of this. My family is very supportive but I

need

> people who have been thru it and have reached the other side. The

side

> where you feel human again and can do things of a basic nature. I

just

> need something to look forward to again. Every step I have been

> looking forward to hasnt worked out very well. Any help anyone

could

> give me would be great. I pray for everyone who has this and worse

as

> I know others pray for me. Thanks so much to all.

>

[Guest guest]

Hi Barbara and Jeanette,

Thanks for the kind words. I am on 8 pills of mtx and humira plus

prednisone. i just need to get some relief from this pain. i miss

doing so many things - even basic things like combing my hair. my

hands and feet are the worst. i have RA in so many joints i didnt

know i even had. are there any tips or any thing i can do to help

make it thru this?????

>

> From: Jeanette <jhkerch@...>

> Subject: [ ] Re: Newly diagnosed RA patient

>

> Date: Sunday, July 20, 2008, 5:17 AM

>

>

>

>

>

>

> So sorry to hear that MTX did not work. Are you doing humira in

> addition to mtx? I started on mtx and prednisone, but it alone was

> not enough. Then plaquenil was added, still not enough. Then enbrel

> was added, this works! In the meantime I feel like I have my own

> pharmacy! I am being weaned off prednisone. I started at 15 mg,

> and I'm down to 6. Every 2 mos we go down 1 more. I do very well

> most the time, just tired more than I used to be. There are some

> things I've given up doing, like fine needlework, cross stitching,

> and crochet. I like cooking, but I do take breaks while preparing

> fancy meals. Hopefully you will find the right meds that work for

> you & you can feel mostly normal again.

>

> --- In @gro ups.com, " shannonvc " <shannonvc@ ..>

wrote:

> >

> > I am a newly diagnosed RA patient and it is really hard. My first

> 3

> > months of methotraxate did not work so now I am just starting the

> first

> > stage of Humira. I am in extreme pain and really dont see any end

> in

> > sight. I was hoping to get lots of information and some support

to

> > help me deal with all of this. My family is very supportive but I

> need

> > people who have been thru it and have reached the other side. The

> side

> > where you feel human again and can do things of a basic nature. I

> just

> > need something to look forward to again. Every step I have been

> > looking forward to hasnt worked out very well. Any help anyone

> could

> > give me would be great. I pray for everyone who has this and

worse

> as

> > I know others pray for me. Thanks so much to all.

> >

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Shannan and Jeanette

 

I am on MTX, Sulfa for RA,  and lyrcia for FBM, and pain patches. It is helping,

but not enough. I go to my rheumy this Friday, She couldn't give me anything

because my blood test showed an infection. She said I must get eye test sent to

her. Plus I must see my primary doctor to check out what the infection is from.

I have done all that. So I am praying for my healing from God in the meantime I

hope my rheumy gives me something else for the pain.

 

I feel a little better. But you will see that the pain goes up and down. I had

my first flare. We were trying to find out what a flare is exactly an it had

more to do with asthma. How ever you can apply it to arthritis by looking for

key words like more intense and lasting longer.

 

Thanks guys for talking to me. At least I know what is out there for pain. What

is humira! I would like to try it to see if it works. I want shots good pain

pills what ever it takes to stop this pain. lol.

I changed my name to Clora May instead of kloey cause kloey seems to be

confusing for my new friends in our support group. Kloey is my name on pal-talk

a chat group like chat.

yours kindly

Clora May

 

From: Jeanette <jhkerch@...>

Subject: [ ] Re: Newly diagnosed RA patient

Date: Sunday, July 20, 2008, 8:17 AM

So sorry to hear that MTX did not work. Are you doing humira in

addition to mtx? I started on mtx and prednisone, but it alone was

not enough. Then plaquenil was added, still not enough. Then enbrel

was added, this works! In the meantime I feel like I have my own

pharmacy! I am being weaned off prednisone. I started at 15 mg,

and I'm down to 6. Every 2 mos we go down 1 more. I do very well

most the time, just tired more than I used to be. There are some

things I've given up doing, like fine needlework, cross stitching,

and crochet. I like cooking, but I do take breaks while preparing

fancy meals. Hopefully you will find the right meds that work for

you & you can feel mostly normal again.

>

> I am a newly diagnosed RA patient and it is really hard. My first

3

> months of methotraxate did not work so now I am just starting the

first

> stage of Humira. I am in extreme pain and really dont see any end

in

> sight. I was hoping to get lots of information and some support to

> help me deal with all of this. My family is very supportive but I

need

> people who have been thru it and have reached the other side. The

side

> where you feel human again and can do things of a basic nature. I

just

> need something to look forward to again. Every step I have been

> looking forward to hasnt worked out very well. Any help anyone

could

> give me would be great. I pray for everyone who has this and worse

as

> I know others pray for me. Thanks so much to all.

>

[Guest guest]

I have been through it and come out on the other side. Enbrel is

working so very well to control my pain and inflammation that you can't

tell that I even have RA. It did take a while of experimentation with

various drugs before this happened, though. So you need to be patient,

but also be the squeaky wheel that gets the grease. Let your rheumy

know just what is going on, and insist on good care. Good luck!

Sue

On Saturday, July 19, 2008, at 09:04 PM, shannonvc wrote:

> My family is very supportive but I need

> people who have been thru it and have reached the other side. The side

> where you feel human again and can do things of a basic nature. I just

> need something to look forward to again.

[Guest guest]

Sorry, I can't give you much advice on tips making it through except

relax, stress makes things worse. When I went thru this time of

imposibilities, I did some rethinking on what was really important to

me. I always loved doing all kinds of crafts, wanting to learn to

more. I decided it was time to do what I did best, no more. I sew.

But at the beginning before I was on most these meds I could not hold

or operate even a pair of scizzors. I admit, I did a lot of " self-

pity party-ing. " I tried very hard to keep focused on the fact that

this was only temporary, life will get better. And so it will for

you in time.

> >

> > From: Jeanette <jhkerch@>

> > Subject: [ ] Re: Newly diagnosed RA patient

> >

> > Date: Sunday, July 20, 2008, 5:17 AM

> >

> > So sorry to hear that MTX did not work. Are you doing humira in

> > addition to mtx? I started on mtx and prednisone, but it alone

was

> > not enough. Then plaquenil was added, still not enough. Then

enbrel

> > was added, this works! In the meantime I feel like I have my own

> > pharmacy! I am being weaned off prednisone. I started at 15

mg,

> > and I'm down to 6. Every 2 mos we go down 1 more. I do very well

> > most the time, just tired more than I used to be. There are some

> > things I've given up doing, like fine needlework, cross

stitching,

> > and crochet. I like cooking, but I do take breaks while preparing

> > fancy meals. Hopefully you will find the right meds that work for

> > you & you can feel mostly normal again.

> >

[Guest guest]

my prayers r with u! god bless,melynda

[ ] Newly diagnosed RA patient

I am a newly diagnosed RA patient and it is really hard.  My first 3

months of methotraxate did not work so now I am just starting the first

stage of Humira.  I am in extreme pain and really dont see any end in

sight.  I was hoping to get lots of information and some support to

help me deal with all of this.  My family is very supportive but I need

people who have been thru it and have reached the other side.  The side

where you feel human again and can do things of a basic nature.  I just

need something to look forward to again.  Every step I have been

looking forward to hasnt worked out very well.  Any help anyone could

give me would be great.  I pray for everyone who has this and worse as

I know others pray for me.  Thanks so much to all.. 

------------------------------------

[Guest guest]

thank you so much melynda for you prayers and good wishes. i see

that people say to give humira 2 or 3 doses but i have 5 doses done

and i really dont feel a difference not like others have. should i

tell the rh that i want to switch or do i just go with her

judgement. i am not really a person who is aggressive so i kind of

go with the flow but i am getting tired of consent pain. i am not on

any pain pills bc the vicoden doesnt work and i am allergic to

percasett and darvocett. i know people think i am throwing a pity

party for myself (which i am not) i just want somewhat of a normal

life back. i want to be able to do dishes or help cook. my husband

does everything right now and i want to help him. It has been a year

since all this started. i am just ready for things to calm down and

i need a break from pain. it took the doctors 7 months to even

diagonse me. they thought it was carpal tunnel. Is there a pain med

you guys recommend - maybe i could try that???? i need to get out of

pain. thanks for listening and sorry for ranting.

--- In , Melynda Gamez <melyndagamez@...>

wrote:

>

> my prayers r with u! god bless,melynda

>

>

>

> [ ] Newly diagnosed RA patient

>

> I am a newly diagnosed RA patient and it is really hard.  My first

3

> months of methotraxate did not work so now I am just starting the

first

> stage of Humira.  I am in extreme pain and really dont see any end

in

> sight.  I was hoping to get lots of information and some support to

> help me deal with all of this.  My family is very supportive but I

need

> people who have been thru it and have reached the other side.  The

side

> where you feel human again and can do things of a basic nature.  I

just

> need something to look forward to again.  Every step I have been

> looking forward to hasnt worked out very well.  Any help anyone

could

> give me would be great.  I pray for everyone who has this and worse

as

> I know others pray for me.  Thanks so much to all.. 

>

>

> ------------------------------------

>

>

[Guest guest]

Hi : Please don't feel bad about ranting, as it is better to let

it out!! That's another reason it is so great here....you can say what

you want and how you truly feel. We have all been where you are now.

Living with daily pain is so hard on us. I know you feel like

screaming.... " make it go away " ! You are not having a " pity party " . You

just can't take the pain anymore.

When did you see or talk with your Rheumy last? I think you need to

call and talk with him, and tell him what is going on with you, and

about all the pain you have. He might want to see you, or at least,

order some RX pain meds. I take Tylenol w/codeine#3, which works good

for me. I also take Tramadol or Oxycodin, depending on my pain level.

It was trial and error with me to find what really works. I have never

taken Humira or any biological drugs. MTX. is what I have been on since

the RA diagnosis.

My Rheumy knows if I call her I really have something going on I can't

handle. She is always there for me, and calls me back within an hour.

If I need a steroid shot, or whatever, she sees me either that day or

the next. She never rushes my appts., no matter how long it takes.

This is the kind of Rheumy I need, and I thank God every day for her.

I know you are thinking of maybe changing Rheumy's. Remeber, " We meet a

lot of frogs, before we meet a Prince " . Isn't that the truth.

I hope you can find the right pain RX so you can start to feel better.

Pain is very wearing, and we all know what it does to our well being.

Hang in there , as there is some light at the end of the tunnell.

I pray you will be pain free soon.

Hugs,

Barbara

> >

> > my prayers r with u! god bless,melynda

> >

> >

> >

> > [ ] Newly diagnosed RA patient

> >

> > I am a newly diagnosed RA patient and it is really hard. My first

> 3

> > months of methotraxate did not work so now I am just starting the

> first

> > stage of Humira. I am in extreme pain and really dont see any end

> in

> > sight. I was hoping to get lots of information and some support to

> > help me deal with all of this. My family is very supportive but I

> need

> > people who have been thru it and have reached the other side. The

> side

> > where you feel human again and can do things of a basic nature. I

> just

> > need something to look forward to again. Every step I have been

> > looking forward to hasnt worked out very well. Any help anyone

> could

> > give me would be great. I pray for everyone who has this and worse

> as

> > I know others pray for me. Thanks so much to all..

> >

> >

> > ------------------------------------

> >

> >

[Guest guest]

Babara and Everyone;

 

What is a biological drug?  And welcome new members. Great support group here.

 

Clora May

 

From: Barbara <bcreedon@...>

Subject: [ ] Re: Newly diagnosed RA patient

Date: Monday, July 21, 2008, 11:46 AM

Hi : Please don't feel bad about ranting, as it is better to let

it out!! That's another reason it is so great here....you can say what

you want and how you truly feel. We have all been where you are now.

Living with daily pain is so hard on us. I know you feel like

screaming... . " make it go away " ! You are not having a " pity party " . You

just can't take the pain anymore.

When did you see or talk with your Rheumy last? I think you need to

call and talk with him, and tell him what is going on with you, and

about all the pain you have. He might want to see you, or at least,

order some RX pain meds. I take Tylenol w/codeine#3, which works good

for me. I also take Tramadol or Oxycodin, depending on my pain level.

It was trial and error with me to find what really works. I have never

taken Humira or any biological drugs. MTX. is what I have been on since

the RA diagnosis.

My Rheumy knows if I call her I really have something going on I can't

handle. She is always there for me, and calls me back within an hour.

If I need a steroid shot, or whatever, she sees me either that day or

the next. She never rushes my appts., no matter how long it takes.

This is the kind of Rheumy I need, and I thank God every day for her.

I know you are thinking of maybe changing Rheumy's. Remeber, " We meet a

lot of frogs, before we meet a Prince " . Isn't that the truth.

I hope you can find the right pain RX so you can start to feel better.

Pain is very wearing, and we all know what it does to our well being.

Hang in there , as there is some light at the end of the tunnell.

I pray you will be pain free soon.

Hugs,

Barbara

> >

> > my prayers r with u! god bless,melynda

> >

> >

> >

> > [ ] Newly diagnosed RA patient

> >

> > I am a newly diagnosed RA patient and it is really hard. My first

> 3

> > months of methotraxate did not work so now I am just starting the

> first

> > stage of Humira. I am in extreme pain and really dont see any end

> in

> > sight. I was hoping to get lots of information and some support to

> > help me deal with all of this. My family is very supportive but I

> need

> > people who have been thru it and have reached the other side. The

> side

> > where you feel human again and can do things of a basic nature. I

> just

> > need something to look forward to again. Every step I have been

> > looking forward to hasnt worked out very well. Any help anyone

> could

> > give me would be great. I pray for everyone who has this and worse

> as

> > I know others pray for me. Thanks so much to all..

> >

> >

> > ------------ --------- --------- ------

> >

> >

[Guest guest]

[ ] Newly diagnosed RA patient

> >

> > I am a newly diagnosed RA patient and it is really hard.  My first

> 3

> > months of methotraxate did not work so now I am just starting the

> first

> > stage of Humira.  I am in extreme pain and really dont see any end

> in

> > sight.  I was hoping to get lots of information and some support to

> > help me deal with all of this.  My family is very supportive but I

> need

> > people who have been thru it and have reached the other side.  The

> side

> > where you feel human again and can do things of a basic nature.  I

> just

> > need something to look forward to again.  Every step I have been

> > looking forward to hasnt worked out very well.  Any help anyone

> could

> > give me would be great.  I pray for everyone who has this and worse

> as

> > I know others pray for me.  Thanks so much to all.. 

> >

> >

> > ------------------------------------

> >

> >