Enbrel

[Guest guest]

Hi Jane

Cymbalta is a new drug in the same class as Neurontin that has antidepressant

properties. It is supposed to act as those of us already on Neurontin and

Prozac. So far I think the jury is still out on Cymbalta. For some it works

well, in others, not good at all.

My PCP has had me on Neurontin 600 mgm three times daily as a trial. It worked

a bit but not enough, so I went to 600 mgms 4 times daily and it worked well.

I am still on that plus Voltaren 75 mgm twice daily and OxyContin 20 mgms 4 or 5

times daily. This makes it interesting at the pharmacy as my main prescription

for Oxy is at a dosage of 3 times a day. So I have another prescription to give

me extra Oxy's to make it through to my next major prescription. I got a

prescription for 1200 OxyContin to be dispensed 100 tabs per 30 day cycle.

Believe me, they are very strict on the 30 days.

Our niece is Bipolar and they had a heck of a time getting her medicine to the

correct dosage. Then her mother thinks that she is healed by her faith in Jesus

Christ and talks her into getting off her meds. Wrong, wrong, wrong move. I

told her that God did not create doctors and scientists just to sit on the

sidelines. They are with us finding new ways to fight old problems with His

help and blessing.

I mention this because I have first hand experience dealing with psychiatric

illnesses and have for many, many years now.

Hey, Barry in Lethbridge, how do you like the weather we are getting. Wet, and

cold or you could say cold and wet. Miserable but good for the crops.

Blessings to all

Fr. Dave

[Guest guest]

LOL You are not the first person to tell me that. I have done some

writing but would have to have a ghost writer to make a good novel out of

it. Thanks, Jane

----- Original Message -----

From: " math_nawi " <math_nawi@...>

Jane

> My life has been different <

You should write a book!

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[Guest guest]

Oh Sweetie I am so happy for you. I'm still dealing with my Enbrel....second

shot yesterday and it was MUCH easier than the first one. I cried after I did it

because I was so relieved that it did not burn as much. I took my time yesterday

and it went better. My daughter had to be with me...usually she is with her Dad

on Wednesdays but he is having a medical procedure for Grave's Disease and

cannot have her this week so she has had to see some things that

kids...especially special needs kids....should not see. She is freaked out by

shots but wanted to be by my side instead of in another room. She is home from

school this week having medical tests done herself due to the fact that she has

been passing mucus since November. She thought I cried because it hurt. I had to

tell her I cried because I was so relieved. I had to see my Hematologist for the

iron metabolism disorder I have the day before and he took a pint of blood

(standard treatment for iron overload which is what I

have). I wish I had not needed that during the time I am starting Enbrel. It

makes it hard to tell if the headache I have on the left side of my head and

behind my eye is from the blood I lost or from the Enbrel. I've also been dizzy

and had a chest pain a few times.I have Mitral Valve Prolapse but have never had

trouble with it. I suppose it could be that. Ya just never know. I just take

antibiotics before dental work. Has anyone else had headaches or dizziness from

Enbrel? I have not had to have a phlebotomy in 7 years so I guess it could make

me dizzy. had to be with me when I got the pint of blood taken too....I

suggested that she go to another room and wait but again she wanted to be there

for me. There were Chemo patients sitting around with IVs and my daughter was

great. She made everyone smile. Me included. But she melted down later the next

day about an hour after my Enbrel injection. I think that the hardest part of

this disease and any other one is

what it does to your family. So although I can't say that the Enbrel has given

me the dramatic relief that you've had Jody, I have felt a little better and

hope to keep feeling better as time goes by and I rejoice with you. It gets me

all excited to think of you feeling so great. I'm sure everyone is going to

remind you to PACE yourself but I bet it's going to be hard to do. This is

encouraging to all of us. Celebrate!!! I keep reading your post over and over.

Very cool. Congrats Honey. You've earned it! -Betz

Betsy Jack itsbetsy@...

[ ] Enbrel

I had my first shot of Enbrel yesterday and started

feeling better last night. I could NOT BELIEVE the

difference. When I went to bed, I just laid there

LOVING being able to turn around easily and nothing

throbbing. I had the best day today... it is like

night and day. I feel normal for the first time in 3

years. I couldn't sleep last night... I just cried

because I felt so good. I got up at 4:30 because I

wasn't sleeping anyway and felt GOOD! My energy is up

(without sleep!) and I feel much more alert. I feel

like today is a new birthday to celebrate.

If I do get pregnant and stop taking Enbrel, at least

I know there is a light in the dark tunnel.

I was pretty scared to start Enbrel.... scared and

hopeful... and now I am wondering WHY did I wait so

long???

Just wanted to pass this on to you all... and I hope

you find pain-free days and shine on those days. I

feel like I am shining now.

Toodles,

Jody

____________ _________ _________ _________ _________ __

[Guest guest]

Jody - thanks so much for posting your positive experience. Oftentimes

folks only post when they're disappointed. I'm very happy it's working

so well for you, for some it really works very quickly!

I'm very thankful for it too! -

[Guest guest]

Hi Jody, I am ever so glad to hread that Enbrel is working for you.

Now a cautionary word. Maybe hold back a bit on increasing the amount

that you do right away. Increase what you do little by little. I

have found and read from others that it is so easy to do everything

that we often over-tax our joints when the auto-immune pain subsides.

Then we unknowingingly bruise and strain joints/tendons ligaments that

haven't felt so " oiled " for so long that we didn't know that people

could actually feel so good, so free. Many of us find ourselves back

in pain again, but for other reasons.

[Guest guest]

Hi Jody,

This is good news, I am happy for you and hope it keeps on working for

you. My thoughts and prayers are with you.

Keep the light shining,

Ian.

>

> I had my first shot of Enbrel yesterday and started

> feeling better last night. I could NOT BELIEVE the

> difference. When I went to bed, I just laid there

> LOVING being able to turn around easily and nothing

> throbbing. I had the best day today... it is like

> night and day. I feel normal for the first time in 3

> years. I couldn't sleep last night... I just cried

> because I felt so good. I got up at 4:30 because I

> wasn't sleeping anyway and felt GOOD! My energy is up

> (without sleep!) and I feel much more alert. I feel

> like today is a new birthday to celebrate.

> If I do get pregnant and stop taking Enbrel, at least

> I know there is a light in the dark tunnel.

> I was pretty scared to start Enbrel.... scared and

> hopeful... and now I am wondering WHY did I wait so

> long???

> Just wanted to pass this on to you all... and I hope

> you find pain-free days and shine on those days. I

> feel like I am shining now.

> Toodles,

> Jody

>

> __________________________________________________

>

[Guest guest]

Hi Betsy

Betcha 1 month worth of enbrel that these symptoms were from giving

blood - 1 pint is probably 1/8 of your blood volume, and until you

take in enough water to make up the difference you can feel stuff like

this.

So keep on keepin on with the enbrel!!! -

> I've also been dizzy and had a chest pain a few times.I have Mitral

Valve Prolapse but have never had trouble with it. <

[Guest guest]

Yeah...I bet you are right. It's better this week. Not as tired but still hoping

for more...I took my daughter and her two friends to the mall today with plans

to let them walk around near me with a cell phone. I had one too. I was going to

sit in the food court. They are 11 and 12. This was a first. But my daughter

melted down before they were to walk around so I had to stay a few feet BEHIND

them (so I would not embarrass them). I knew by how she was acting (high

functioning autism) that it was not going to be the day she got to walk around

adult-free. I was worried because I knew I would be exhausted tonight and all

day tomorrow from walking around. So I did it...I broke down and got a wheel

chair. I was sad (but hid it) the first 10 or 15 minutes but then....it felt so

good to be able to sit rather than stand around in pain looking for a place to

sit constantly. I even stood up in Bath and Body Shop and said " I'm healed! "

just for kicks. That'll teach the little brats

to worry about me embarrasing them. It was a little hard on my thumbs to roll

the wheels after awhile so one of them volunteered to push for a bit. I

refrained from tossing the bag of penny candy I had in my lap out like I was in

a parade. And now we are home and I feel rested but had a great time. So it was

a break through for me. I am not going to hesitate to use a chair next time. It

wasn't so bad. And I'm gonna keep on keepin on ( I am remembering that T-shirt I

owned with the big bell bottomed clad leg and stacked shoe that said that....).

Thanks, -Betz

Betsy Jack itsbetsy@...

[ ] Re: Enbrel

Hi Betsy

Betcha 1 month worth of enbrel that these symptoms were from giving

blood - 1 pint is probably 1/8 of your blood volume, and until you

take in enough water to make up the difference you can feel stuff like

this.

So keep on keepin on with the enbrel!!! -

> I've also been dizzy and had a chest pain a few times.I have Mitral

Valve Prolapse but have never had trouble with it. <

[Guest guest]

,

Thank you so much for sharing in my happiness. I

think I have cried more while feeling so good than I

did when I was hurting.... crying for that girl who

had it so much worse than I thought.

I appreciate this list so much.... have learned

tremendously from you all.

Jody

--- math_nawi <math_nawi@...> wrote:

> Jody - thanks so much for posting your positive

> experience. Oftentimes

> folks only post when they're disappointed. I'm very

> happy it's working

> so well for you, for some it really works very

> quickly!

>

> I'm very thankful for it too! -

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Brent~

Thank you for your word of caution. I remember

reading this advice before on this list, but forgot!

So glad you mentioned it again.

I am not doing anything wild just yet.... just happy

to do a little shopping and laundry on the same day...

and to move in comfort.

Because of your advice I am going to be watching the

Teachers VS. the 6th grade students in volleyball on

Thursday rather than playing... even though I played

college vball (and one of my co-workers was one of my

teammates!) We used to be the stars of the team, and

to us it is " jungle ball " ... Back in the day, we even

played on ESPN.

I am just so grateful to know life again.

I wish you all the same relief. It is mind-boggling.

Toodles,

Jody

--- skrewtz <brentherman@...> wrote:

> Hi Jody, I am ever so glad to hread that Enbrel is

> working for you.

> Now a cautionary word. Maybe hold back a bit on

> increasing the amount

> that you do right away. Increase what you do little

> by little. I

> have found and read from others that it is so easy

> to do everything

> that we often over-tax our joints when the

> auto-immune pain subsides.

> Then we unknowingingly bruise and strain

> joints/tendons ligaments that

> haven't felt so " oiled " for so long that we didn't

> know that people

> could actually feel so good, so free. Many of us

> find ourselves back

> in pain again, but for other reasons.

>

>

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Betz~

I love reading all of your posts... you keep many

laughing when it is needed. Thank you for being so

happy for me.

I am very familiar with Aspergers and the challenges

you have with your daughter. I had a student with

Aspergers... I found him so amazing that I decided I

wasn't ready to let him go at the end of the year, so

I changed grade levels and took the whole class with

me. He is graduating high school this Spring and is

even more amazing.

Thank you,

Jody

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

>

__________________________________________________

[Guest guest]

Thank you sweetie. I needed this tonight. Rough week for my health and my

daughters. These kids are amazing but when they are tough, they are very tough.

My daughter has had some very aggressive moments this week and it's a scary

thing. I know that she will be ok....that life is going to be ok. This word

about your special student is what I needed. -Betz

Betsy Jack itsbetsy@...

Re: [ ] Enbrel

Betz~

I love reading all of your posts... you keep many

laughing when it is needed. Thank you for being so

happy for me.

I am very familiar with Aspergers and the challenges

you have with your daughter. I had a student with

Aspergers... I found him so amazing that I decided I

wasn't ready to let him go at the end of the year, so

I changed grade levels and took the whole class with

me. He is graduating high school this Spring and is

even more amazing.

Thank you,

Jody

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

>

____________ _________ _________ _________ _________ __

[Guest guest]

Hi Jody,

That is just brilliant! I hope it keeps working well for you and you are hop,

skipping and jumping all over the place.

Take care,

In a message dated 08/06/2006 11:10:18 GMT Daylight Time,

jodpaulson@... writes:

I had my first shot of Enbrel yesterday and started

feeling better last night. I could NOT BELIEVE the

difference. When I went to bed, I just laid there

LOVING being able to turn around easily and nothing

throbbing. I had the best day today... it is like

night and day. I feel normal for the first time in 3

years.

[Guest guest]

this is great news !! cthy from ma

[Guest guest]

Thanks for sharing...

Love and Peace Always

Shaun and Barb

[Guest guest]

I took enbrel for 3 months and had to get off due to a serious sinus infection,

it was rough with the pain at first, but started on low dose od prednisone and

the AP, a friend of mine also is on enbrel, i believe for over a year and has to

get off periodically when she gets some infection, her doc never said that you

shouldn't get off it. but to go back when the infection is over. It's tough

because enbrel works really good. Hope this help somewhat.....

bobbie4213 <bobbie4213@...> wrote: I have been on enbrel for over

one year now. I keep being told how

dangerous this drug is. I asked my rheumatologist if I could go off

the enbrel even possibly wean myself slowly off the drug. He said once

I start the drug I cannot stop. Has anyone had any experience with

enbrel or with going off the drug. If anyone can give me some input on

this subject, I would appreciate it. Thankyou!

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

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[Guest guest]

my husband was on enbrel for a year for psoriatic arthritis and he developed the

numbness too he has been diagnosed with a nerve disease called chronic

inflammatory demylenating polyneuropathy.he also has dropsy in his foot.you

should probably see a neuroogist .feel free to email me if you need to talk

misty from pennsylvania

sshepard2 <sshepard2@...> wrote:

I am 50, female, and I have psoriatic arthritis. I have had

psoriasis since the age of 10 and arthritis for approximately 5

years. I have been on Enbrel for 6 mos. In the last 2 weeks, I

have developed neuropathy (numbness or commonly called

dropsy) in my right foot. Has anyone else had this side effect

from Enbrel? I am now off the Enbrel; I am still on methotrexate,

folic acid, and mobic. I am in physical therapy as of this week

and am scheduled for an EMG next week. I knew there were

side effects with Enbrel; I just had not heard about this one.

When will I get feeling back; does anyone know? I am a teacher;

thank goodness we are on fall break for 2 weeks. By the way, I

have never been in a group, so be patient! SS

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

All-new - Fire up a more powerful email and get things done faster.

[Guest guest]

Guess what folks? They are now using Enbrel to TREAT CIDP! Can ya

believe THAT? I was doing research online last night on Enbrel

induced Multiple Sclerosis because I'm being admitted to the

hospital today for symptoms of MS and I saw article after article on

how they are treating CIPD with Enbrel. I'm confused for sure. -Betz

> I am 50, female, and I have psoriatic arthritis. I have

had

> psoriasis since the age of 10 and arthritis for approximately 5

> years. I have been on Enbrel for 6 mos. In the last 2 weeks, I

> have developed neuropathy (numbness or commonly called

> dropsy) in my right foot. Has anyone else had this side effect

> from Enbrel? I am now off the Enbrel; I am still on methotrexate,

> folic acid, and mobic. I am in physical therapy as of this week

> and am scheduled for an EMG next week. I knew there were

> side effects with Enbrel; I just had not heard about this one.

> When will I get feeling back; does anyone know? I am a teacher;

> thank goodness we are on fall break for 2 weeks. By the way, I

> have never been in a group, so be patient! SS

>

>

>

>

>

>

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

> All-new - Fire up a more powerful email and get

things done faster.

>

>

[Guest guest]

> > Good basic nutrition is very important to fight the good fight...

>

> Very sound advice pearl!

>

> > Pearl (week 2 on Enbrel) does anyone know how long before i can

> > tell this is working?

> I am in a similar space, starting enbrel in a couple weeks. I've read

> and heard that some folks get relief right away, some it takes 3-6

> months, most fall somewhere in between.

>

> Cheers -

>

I have been on ENBREL for a month and Praise God I am not having any

problems with it. I was having a horible problem with my right wrist

and a hand specialist wanted to fuse it. I am right handed.I started

on enbrel and I could feel a difference the day after my first

injection. I was really concerneed about injecting myself. Nothing to

it I dont get a burning sensation like some say.

[Guest guest]

Good luck Betsy - I hope you get it all sorted out.

That's pretty strange, enbrel for CIDP! Can I join the club - this has

me confused too!

[Editor's Note: Betz is now in Vassar Brothers Hospital in Poughkeepsie, NY. I

drove her there and helped her get checked in, so I know she's in a marvelous

facility. She will be seen by a number of terrific doctors in a variety of

fields. Betz remains Betz - concerned, but very optimistic and upbeat. I'll

keep you informed of her progress until she's able to be with all of us again.

I know she would want you to keep her in your prayers. Kathy F.]

[Guest guest]

Betz - MS? Did I hear that right? I'm praying hard for you, girl!

best wishes,

sherry z

>

> Guess what folks? They are now using Enbrel to TREAT CIDP! Can ya

> believe THAT? I was doing research online last night on Enbrel

> induced Multiple Sclerosis because I'm being admitted to the

> hospital today for symptoms of MS and I saw article after article on

> how they are treating CIPD with Enbrel. I'm confused for sure. -Betz

[Guest guest]

Kathy - bless you! I know your presence was a very wonderful help

to Betz. Thanks so much and also thanks in advance for keeping us

informed.

sherry z

>

> Good luck Betsy - I hope you get it all sorted out.

>

> That's pretty strange, enbrel for CIDP! Can I join the club - this

has

> me confused too!

>

> [Editor's Note: Betz is now in Vassar Brothers Hospital in

Poughkeepsie, NY. I drove her there and helped her get checked in,

so I know she's in a marvelous facility. She will be seen by a

number of terrific doctors in a variety of fields. Betz remains

Betz - concerned, but very optimistic and upbeat. I'll keep you

informed of her progress until she's able to be with all of us

again. I know she would want you to keep her in your prayers.

Kathy F.]

>

[Guest guest]

I am keeping her in mine

It sounds like she is in good hands

June

>

> Good luck Betsy - I hope you get it all sorted out.

>

> That's pretty strange, enbrel for CIDP! Can I join the club - this has

> me confused too!

>

> [Editor's Note: Betz is now in Vassar Brothers Hospital in

Poughkeepsie, NY. I drove her there and helped her get checked in, so

I know she's in a marvelous facility. She will be seen by a number of

terrific doctors in a variety of fields. Betz remains Betz -

concerned, but very optimistic and upbeat. I'll keep you informed of

her progress until she's able to be with all of us again. I know she

would want you to keep her in your prayers. Kathy F.]

>

[Guest guest]

I hope your hospital stay goes well. YOu must be so scared! I hope

the best for you and a full recovery!

>

> Guess what folks? They are now using Enbrel to TREAT CIDP! Can ya

> believe THAT? I was doing research online last night on Enbrel

> induced Multiple Sclerosis because I'm being admitted to the

> hospital today for symptoms of MS and I saw article after article

on

> how they are treating CIPD with Enbrel. I'm confused for sure. -

Betz

>

[Guest guest]

> > [Editor's Note: Betz is now in Vassar Brothers Hospital in

> Poughkeepsie, NY. I drove her there and helped her get checked in, so

> I know she's in a marvelous facility. She will be seen by a number of

> terrific doctors in a variety of fields. Betz remains Betz -

> concerned, but very optimistic and upbeat. I'll keep you informed of

> her progress until she's able to be with all of us again. I know she

> would want you to keep her in your prayers. Kathy F.]

I really haven't been following the board too closely but noticed this

post. I do not know Betz but it sounds like she is really ill and I

wish her my best. What type of problem is she having?

Janet

[Editor's Note: Betz is having trouble with her vision, a UTI, difficulty

walking, dizziness, low blood pressure, etc. Kathy F.]