Enbrel

[Guest guest]

I realize that it's been 3 years since we were on enbrel and things may have changed, but when we were using it, it was extremely painful coming out of the fridge. (we used the kit that you mix up the powder with the liquid). I called the manufacturer to see if it would change the potency of enbrel to let it warm a bit, and they said that it was fine to leave it out for 30 minutes before the shot. Another thing we did was to mix it up using the vial provided and then draw it out with a higher gauge insulin syringe than the syringe they included. It was a pretty big needle that was included in the kit. It worked pretty well, although sometimes we'd bend several of the smaller syringes trying to get the enbrel out of the vial- it's a pretty tough top on the vial.

My husband is diabetic and keeps his insulin in the fridge, but it is recommended to let his insulin get to room temp before putting it in his pump for use as the cold insulin can cause tissue damage as it enters the subcutaneous tissue.

Please don't leave your enbrel in the cabinet- it will affect the potency of the drug.

Call the manufacturer and talk to them.

Jinny (11 pauci)

On Tue, 6 May 2008 08:56:15 -0700 (PDT) Helen Pense <hpense@...> writes:

It is interesting to hear what different doctors have to say. At first, she told us not to leave it out at all, now we can do it for 10 minutes....I will have to read up on the pamplet to see what that says as well. The 10 min has made a huge difference for my daughter, and the pain of the medicine going in her arm. She told us at injection training and transporting the med's back home, to make sure we had a cooler, so it wouldn't go to room temperature, because it was like injecting saline.

We have the same kind of shots, where you have to put it all together, and mix it up. It doesn't make sense, why it would be kept cold in the fridge when storing it, but have it to go room temperature for injection......then we should be able to leave it out in the cabinet right? I am going to do some research and see what I can find out.

I am not sure about the headache and nausea, we have never had any side effects from it.

Helen

Enbrel> > > I just wanted to thank everyone for there input on the Enbrel > injections. started the injections and I cannot believe the > results. She is able to walk and run and get up after sitting and > sleeping with little or no stiffness. The swelling in several joints > has gone down, she is so happy. It is great to be able to see her > acting like a kid again.> We are still getting adjusted to doing the injections but it gets > easier, the more you do it. I hope my Dr. will cut back on the MTX, I > still worry about the effects of all of these drugs on her.> > One more question, would like to email or post with other kids > that have JIA (JRA/JA), is there a site that anyone knows of or do the > kids on this group email?> If anyone knows, please let me know.> > Thanks, again for all the wonderful support on this group.> > Trish (-11;Poly JIA)> > > > > ____________ _________ _________ _________ _________ _________ _____________ ___> Be a better friend, newshound, and > know-it-all with Mobile. Try it now. http://mobile. / ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ>

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Jinny, don't worry, I am not going to leave the Enbrel in the cabinet. I store in it the fridge like it is supposed to. I was just saying that if you are allowed for it to go to room temp, to give the shot, then why does it have to be stored in the fridge to keep it cold?

Helen

Enbrel> > > I just wanted to thank everyone for there input on the Enbrel > injections. started the injections and I cannot believe the > results. She is able to walk and run and get up after sitting and > sleeping with little or no stiffness. The swelling in several joints > has gone down, she is so happy. It is great to be able to see her > acting like a kid again.> We are still getting adjusted to doing the injections but it gets > easier, the more you do it. I hope my Dr. will cut back on the MTX, I > still worry about the effects of all of these drugs on her.> > One

more question, would like to email or post with other kids > that have JIA (JRA/JA), is there a site that anyone knows of or do the > kids on this group email?> If anyone knows, please let me know.> > Thanks, again for all the wonderful support on this group.> > Trish (-11;Poly JIA)> > > > > ____________ _________ _________ _________ _________ _________ _____________ ___> Be a better friend, newshound, and > know-it-all with Mobile. Try it now. http://mobile. / ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ>

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Hi,

I know the answer to this one.Once, someone at our pharmacy went ahead and bagged it up as soon as the shipment came in.It hung in that bag for 3 days.They were sweating bullets and called Enliven services.Room temp was ok but it dramaticly shortened the shelf life to 6 weeks.We keep 's Enbrel and MTX out at room temp for about a half hour.

Another thing,someone mentioned smaller insulin needles.Big no no.Anything smaller then a 28gauge needle will change the molecular structure and ruin the Enbrel rendering it useless.We use a 27 gauge for the Enbrel and a tiny 31 gauge for the MTX.

Becki and 9 systemic

Enbrel> > > I just wanted to thank everyone for there input on the Enbrel > injections. started the injections and I cannot believe the > results. She is able to walk and run and get up after sitting and > sleeping with little or no stiffness. The swelling in several joints > has gone down, she is so happy. It is great to be able to see her > acting like a kid again.> We are still getting adjusted to doing the injections but it gets > easier, the more you do it. I hope my Dr. will cut back on the MTX, I > still worry about the effects of all of these drugs on her.> > One

more question, would like to email or post with other kids > that have JIA (JRA/JA), is there a site that anyone knows of or do the > kids on this group email?> If anyone knows, please let me know.> > Thanks, again for all the wonderful support on this group.> > Trish (-11;Poly JIA)> > > > > ____________ _________ _________ _________ _________ _________ _____________ ___> Be a better friend, newshound, and > know-it-all with Mobile. Try it now. http://mobile. / ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ>

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

We always used the insulin needles. It is what they taught us to do at Childrens when we first entered the study in the way back days. All the patients were taught to do it that way. I talked to one of the reps to see if it would be a problem. He told me it wouldn't. On the record--they will never tell you that if it isn't specifically in the literature. ;)eBecki Larson <sojramom@...> wrote: Hi, I know the answer to this

one.Once, someone at our pharmacy went ahead and bagged it up as soon as the shipment came in.It hung in that bag for 3 days.They were sweating bullets and called Enliven services.Room temp was ok but it dramaticly shortened the shelf life to 6 weeks.We keep 's Enbrel and MTX out at room temp for about a half hour. Another thing,someone mentioned smaller insulin needles.Big no no.Anything smaller then a 28gauge needle will change the molecular structure and ruin the Enbrel rendering it useless.We use a 27 gauge for the Enbrel and a tiny 31 gauge for the MTX. Becki and 9 systemic Enbrel> > > I just wanted to thank everyone for there input on the Enbrel > injections. started the injections and I cannot believe the > results. She is able to walk and run and get up after sitting and > sleeping with little or no stiffness. The swelling in several joints > has gone down, she is so happy. It is great to be able to see her > acting like a kid again.> We are still getting adjusted to doing the injections but it gets > easier, the more you do it. I hope my Dr. will cut back on the MTX, I > still worry about the effects of all of these drugs on her.> > One more question, would like to email or post with other kids >

that have JIA (JRA/JA), is there a site that anyone knows of or do the > kids on this group email?> If anyone knows, please let me know.> > Thanks, again for all the wonderful support on this group.> > Trish (-11;Poly JIA)> > > > > ____________ _________ _________ _________ _________ _________ _____________ ___> Be a better friend, newshound, and > know-it-all with Mobile. Try it now. http://mobile. / ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ> Be a better friend, newshound, and know-it-all with Mobile. Try it now.

Be a better friend, newshound, and know-it-all with Mobile. Try it now. Be a better friend, newshound, and know-it-all with Mobile. Try it now.

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

I am not sure about enbrel, has never taken it so I haven't looked into

the specifics that closely when reading about it - but a lot of medication

dosage is determined by the age and weight of the child if e has been on the

same dose for 3 years, it could be time for an increase.

Val

Rob's Mom (10, systemic)

l Message-----

From: Todd and Barb Lange <lange2@...>

Sent: Wed, 9 Jul 2008 8:02 am

Subject: Enbrel

Hello everyone,

Our daughter has been on Enbrel since she was 4 yrs. old. It has always

worked like a charm. We only take the Enbrel (not mtx). I've noticed the

last few times that she had breakthrough symptoms 2-3 days after her

injection. I'm wondering if the Enbrel is no longer working, or if she

needs a larger dose. She's been on the same dose all along. She now takes

12.5 mg each time. Anyone else have a similar problem? Anyone else have a

7yr old on Enbrel . . . .what is the dosage?

Barb and e (7yrs. JRA)

[Guest guest]

Barb,

Emerson has systemic JRA/Uveitis she has been on Enbrel since she was diagnosed

at 15 months, she is 6years old and her dosage is 0.6ml 2x week, she never

complains about hurting, rashes or fever. She's also taking methotrexate for the

uveitis. We are thinking of switching b/c of the eyes. I can count on one hand

how many times she's ever complained of hurting. I guess on that side so far we

are blessed. Let me know if you need anything or have any other questions.

Krissy (Emmie 6yr sys JRA/Landen 2yr ana positive)

Enbrel

Hello everyone,

Our daughter has been on Enbrel since she was 4 yrs. old. It has always

worked like a charm. We only take the Enbrel (not mtx). I've noticed the

last few times that she had breakthrough symptoms 2-3 days after her

injection. I'm wondering if the Enbrel is no longer working, or if she

needs a larger dose. She's been on the same dose all along. She now takes

12.5 mg each time. Anyone else have a similar problem? Anyone else have a

7yr old on Enbrel . . . .what is the dosage?

Barb and e (7yrs. JRA)

[Guest guest]

Barb,

Emerson has systemic JRA/Uveitis she has been on Enbrel since she was diagnosed

at 15 months, she is 6years old and her dosage is 0.6ml 2x week, she never

complains about hurting, rashes or fever. She's also taking methotrexate for the

uveitis. We are thinking of switching b/c of the eyes. I can count on one hand

how many times she's ever complained of hurting. I guess on that side so far we

are blessed. Let me know if you need anything or have any other questions.

Krissy (Emmie 6yr sys JRA/Landen 2yr ana positive)

Enbrel

Hello everyone,

Our daughter has been on Enbrel since she was 4 yrs. old. It has always

worked like a charm. We only take the Enbrel (not mtx). I've noticed the

last few times that she had breakthrough symptoms 2-3 days after her

injection. I'm wondering if the Enbrel is no longer working, or if she

needs a larger dose. She's been on the same dose all along. She now takes

12.5 mg each time. Anyone else have a similar problem? Anyone else have a

7yr old on Enbrel . . . .what is the dosage?

Barb and e (7yrs. JRA)

[Guest guest]

....please don't hesitate to take it. those chances are very very

small and the enbrel is such a huge help. I have been on it for about 5 yrs now

and its the only thing that has helped me. I don't know where I would be

right now without it. It's a Godsend to me.

I felt the benefits right away..some people have to wait a month or so but

they can feel it helping.

Please dont be afraid. You can always quit the enbrel if you want down the

road.

Hugs..paula

Ohio

**************

A Good Credit Score is 700 or Above. See yours in just 2

easy steps!

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[Guest guest]

Hi ,

I am back at my computer now. What everyone says is so true! Give Enbrel a

chance! It is life changing! Ok, so you read the warning insert, now toss

it. Yup, it's scary and as someone said, it is a respectable drug, a

formidable drug! But it does work. It took about 4 or 5 weeks to kick in for

me,

for others it works quicker. My first dose, I got one heck of a headache and

muscle pain. But after that, nothing, and now I can't wait for Mondays! You

state you are in really bad shape and need help with most things....and you

know that those other things are a small chance....well then you've got your

answer...go for it....take back your independence! Give it a shot....pun

intended! LOL. Good luck. Let us know how you are doing. Hugs!!

Heidi in Mass.

_

In a message dated 3/17/2009 2:56:15 P.M. Eastern Daylight Time,

moniquesauve@... writes:

hi

i'd love to hear from ppl who are on enbrel and ppl who've taken it.

i've had the rx i n my fridge for 2 weeks now ready to take but can't

get over fear. am in really bad shape. need help with most things. so

know i need to do something but the thought of ending up with MS or

blind AND RA is more than i can bear. i know it's a small chance but it

is there. how did others overcome this fear?

thanks so much

monique

**************Feeling the pinch at the grocery store? Make meals for Under

$10. (http://food.aol.com/frugal-feasts?ncid=emlcntusfood00000002)

[Guest guest]

I also have a fear of meds so I know what you are going through. Here are some

things that I do to put things in perspective. When doing clinical trials they

have to list everything that happens to a person while taking the drug. This

means that if a person get a cold, chicken pox or whatever while in the trial

they list it as a possible side effect. Now the person getting the illness may

have nothing to do at all with the drug but they list it to cover their butts.

Same thing goes for the going blind or MS. The people who got that may have been

from the drug but it may not have. That is the million dollar question.

However, if you have no quality of life right now and can't do things for

yourself, how much better is your life today.

I currently am battling the same exact thing because when I see my rheummy in

April he is considering the Enbrel with me too. What I have done is called a

couple of my local pharmacists and talked to them about the drug. Every one of

them helped me to feel better about the drug and said they themselves would take

it if they had to. I have also ran into a couple of medical professionals who

take either Remecade, the Enbrel or Humira. They seem real comfortable about it

and have said it really helps.

Ok didn't mean to write a book but if it helps you with your fears then it is

worth it because I know how debilitating that fear is.

Best of luck to you and let me know how it turns out and I will do the same.

>

> hi

>

> i'd love to hear from ppl who are on enbrel and ppl who've taken it.

> i've had the rx i n my fridge for 2 weeks now ready to take but can't

> get over fear. am in really bad shape. need help with most things. so

> know i need to do something but the thought of ending up with MS or

> blind AND RA is more than i can bear. i know it's a small chance but it

> is there. how did others overcome this fear?

>

> thanks so much

> monique

>

[Guest guest]

,

Enbrel has been a life saver for me. Without it, I hate to think what I might

be like. I was really afraid of Enbrel and refused to even try it for the

longest time. Now, I've been on it for about 2 yrs and am so pleased with it.

This may seem small but.....I peeled potatoes last night for potato salad. I

told my husband that I credited the Enbrel with my ability to do that.

Phyllis

[ ] enbrel

hi

i'd love to hear from ppl who are on enbrel and ppl who've taken it.

i've had the rx i n my fridge for 2 weeks now ready to take but can't

get over fear. am in really bad shape. need help with most things. so

know i need to do something but the thought of ending up with MS or

blind AND RA is more than i can bear. i know it's a small chance but it

is there. how did others overcome this fear?

thanks so much

monique

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

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10:18:00

[Guest guest]

monique,

im not at my home computer right now but would love to speak with you. Please

feel free to email me privately. this is the first time i have ussed this phone

to reply to the list so i dont know if my personal signature will show up. i

ALWAYS delete it first. if it shows forgive me you do not have to yell at me. im

learning on my new toy.

heidi in mass

----------

This AOL Mail was sent from AT & T's Wireless network using Mobile Email

- [ ] enbrel

hi

i'd love to hear from ppl who are on enbrel and ppl who've taken it.

i've had the rx i n my fridge for 2 weeks now ready to take but can't

get over fear. am in really bad shape. need help with most things. so

know i need to do something but the thought of ending up with MS or

blind AND RA is more than i can bear. i know it's a small chance but it

is there. how did others overcome this fear?

thanks so much

monique

[Guest guest]

Throw away the package insert.  Trust me.  It's amazing.  It started working for

me within a week.  I didn't gell up anymore.  I was so much more alert and less

ouchy.  Now I'm on monotherapy.  I even took it while pregnant and the baby is

doing just great.  Sure, it's a powerful drug and one to respect, but if there

are problems you can stop.  Most of the scary stuff is very rare and certainly

untreated RA  is a very scary thing.  Try it!!!  You can do it!

(I also had a beer before my first shot, that helps!)

________________________________

From: Sauve <moniquesauve@...>

Sent: Tuesday, March 17, 2009 1:55:37 PM

Subject: [ ] enbrel

hi

i'd love to hear from ppl who are on enbrel and ppl who've taken it.

i've had the rx i n my fridge for 2 weeks now ready to take but can't

get over fear. am in really bad shape. need help with most things. so

know i need to do something but the thought of ending up with MS or

blind AND RA is more than i can bear. i know it's a small chance but it

is there. how did others overcome this fear?

thanks so much

monique

[Guest guest]

,

If you are afraid of the side effects of Enbrel, think about the side effects of

RA.

I was on Enbrel for over a year. My body seems to learn to work around

medications fairly fast. Now I'm on Remicade, and even on that I am going to a

higher dose. This is my third biologic. The help I have received from then has

been nothing less than a miracle. I tend to have excellent results for a few

months, one worked for six months(!), and then started a slow decline back to

where I was. This does not mean I will stop trying to find the one that works.

I know about the side effect of RA, what it does to your body in the long term,

and the losses you have. Not just in your body, but mentally with depression and

forgetfulness, loss of friends, and feeling isolated. Medications like Enbrel

help you to live a happy live.

[Guest guest]

thank you all so much for answering. i wish you were here to cheer me on. i

guess i just have to take a deep breath and do it right!?! i can't take this

pain anymore. i'm barely eating as it lessens my pain. can't go on like this.

life - i want you back!! god i hope this works.

hugs to you all

monique

>

> Throw away the package insert.  Trust me.  It's amazing.  It started working

for me within a week.  I didn't gell up anymore.  I was so much more alert and

less ouchy.  Now I'm on monotherapy.  I even took it while pregnant and the baby

is doing just great.  Sure, it's a powerful drug and one to respect, but if

there are problems you can stop.  Most of the scary stuff is very rare and

certainly untreated RA  is a very scary thing.  Try it!!!  You can do it!

> (I also had a beer before my first shot, that helps!)

>

>

>

>

> ________________________________

> From: Sauve <moniquesauve@...>

>

> Sent: Tuesday, March 17, 2009 1:55:37 PM

> Subject: [ ] enbrel

>

>

> hi

>

> i'd love to hear from ppl who are on enbrel and ppl who've taken it.

> i've had the rx i n my fridge for 2 weeks now ready to take but can't

> get over fear. am in really bad shape. need help with most things. so

> know i need to do something but the thought of ending up with MS or

> blind AND RA is more than i can bear. i know it's a small chance but it

> is there. how did others overcome this fear?

>

> thanks so much

> monique

>

>

>

>

>

>

>

[Guest guest]

You can do it!

It also helps to have someone else give you the shot.  If there's no one around,

consider stopping by your rheum's office, or even you general doc's office. 

Most nurses are happy to give you a shot.  I work in a family practice clinic

and I bring mine to work once a week.

________________________________

From: moniquesauve <moniquesauve@...>

Sent: Tuesday, March 17, 2009 4:24:05 PM

Subject: [ ] Re: enbrel

thank you all so much for answering. i wish you were here to cheer me on. i

guess i just have to take a deep breath and do it right!?! i can't take this

pain anymore. i'm barely eating as it lessens my pain. can't go on like this.

life - i want you back!! god i hope this works.

hugs to you all

monique

>

> Throw away the package insert.  Trust me.  It's amazing.  It started working

for me within a week.  I didn't gell up anymore.  I was so much more alert and

less ouchy.  Now I'm on monotherapy.  I even took it while pregnant and the baby

is doing just great.  Sure, it's a powerful drug and one to respect, but if

there are problems you can stop.  Most of the scary stuff is very rare and

certainly untreated RA  is a very scary thing.  Try it!!!  You can do it!

> (I also had a beer before my first shot, that helps!)

>

>

>

>

> ____________ _________ _________ __

> From: Sauve <moniquesauve@ ...>

> @gro ups.com

> Sent: Tuesday, March 17, 2009 1:55:37 PM

> Subject: [ ] enbrel

>

>

> hi

>

> i'd love to hear from ppl who are on enbrel and ppl who've taken it.

> i've had the rx i n my fridge for 2 weeks now ready to take but can't

> get over fear. am in really bad shape. need help with most things. so

> know i need to do something but the thought of ending up with MS or

> blind AND RA is more than i can bear. i know it's a small chance but it

> is there. how did others overcome this fear?

>

> thanks so much

> monique

>

>

>

>

>

>

>

[Guest guest]

Hi ;

Good luck with your new med. Hopefully you will do good, and soon be

out of all your suffering and pain. I don't really think about all

these RA meds I take. I take them to help me live a better life, and to

stop the effects of RA on my body.

It is always hard to take the first step, but you will see if it works

for you.

Praying all goes well for you, and that you will be pain free soon. I

hope you feel good enough to start living your life again. Take care

of yourself.

Hugs,

Barbara

> >

> > Throw away the package insert. Trust me. It's amazing. It started

working for me within a week. I didn't gell up anymore. I was so much

more alert and less ouchy. Now I'm on monotherapy. I even took it

while pregnant and the baby is doing just great. Sure, it's a powerful

drug and one to respect, but if there are problems you can stop. Most

of the scary stuff is very rare and certainly untreated RA is a very

scary thing. Try it!!! You can do it!

> > (I also had a beer before my first shot, that helps!)

> >

> >

> >

> >

> > ________________________________

> > From: Sauve moniquesauve@

> >

> > Sent: Tuesday, March 17, 2009 1:55:37 PM

> > Subject: [ ] enbrel

> >

> >

> > hi

> >

> > i'd love to hear from ppl who are on enbrel and ppl who've taken it.

> > i've had the rx i n my fridge for 2 weeks now ready to take but

can't

> > get over fear. am in really bad shape. need help with most things.

so

> > know i need to do something but the thought of ending up with MS or

> > blind AND RA is more than i can bear. i know it's a small chance but

it

> > is there. how did others overcome this fear?

> >

> > thanks so much

> > monique

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

,

The pain was greater than my fear when I was faced with the choice of

a biologic. I chose Enbrel because it had been around longer than

Humira. I've been on it now for 5-6 years, and it completely controls

my pain and inflammation. A bonus is that I don't get any adverse side

effects. They have to list all of the side effects that any one has

gotten, but that doesn't mean that you'll get any of them. If you do,

you can always switch to another med.

Maybe you'll have the same good results that I do! Here's hoping! So

take it out of the fridge and try it out.

Sue

On Mar 17, 2009, at 2:55 PM, Sauve wrote:

> hi

>

> i'd love to hear from ppl who are on enbrel and ppl who've taken it.

> i've had the rx i n my fridge for 2 weeks now ready to take but can't

> get over fear. am in really bad shape. need help with most things. so

> know i need to do something but the thought of ending up with MS or

> blind AND RA is more than i can bear. i know it's a small chance but

> it

> is there. how did others overcome this fear?

>

[Guest guest]

thanks maria for the nice message. i'm glad enbrel is helping you. am

waiting for my friend who takes enbrel to come over today. she says

she'll show me how to do it. then my hubby will do them for me. i hope

it works for me too. i so hope. i too cry at least once a day b/c of the

pain. it's awful to live like this. hopefully no more.

monique

[Guest guest]

wow thanks krissy. that is great news!! so inspiring. thank you all for

helping me to do this. knowing you all do it and it helps you has helped

me to make the dec. to do it. so THANK YOU ALL for being here!!!

monique

[Guest guest]

Hi :

I want to wish you a warm welcome to our group of caring, informative,

and kind people. You have come to the right place to vent, write, etc.

I wish you lots of luck with your Enbrel medicine. I know so many here

take it, and are thrilled with the way it works for them.

I am sorry your RA has been so bad, and that you suffer so much with it.

I pray there are better days ahead for you, and that you will be pain

free.

Hugs,

Barbara

--- In , " sarahledsom " <sarahledsom@...>

wrote:

>

>

> Hi All,

>

> I have just come on board tonight so please bare with me while I find

my

> way around. I'll introduce myself first.

>

> My name is , I am 54 and have had this horrible disease for 12

> years now. For the first 5-6 years I managed to continue working as a

> nurse/manager of a Nursing Home for the elderly, which I absolutely

> adored. About 6 years ago I had a really bad flare up and had to be

> hospitalised for the first time. For the first 6 years I was only on

MXT

> 22mg,then it ceased to work. I have had long periods confined to a

> wheelchair since then, have bad deformities in both hands and both

feet,

> and have it in both shoulders, knees,wrists, in fact all over. I badly

> need 2 knee replacements, but have been told I'm too young!!!!! That's

> strange, because I feel 80 years old.

>

> My Rheumatologist, decided to put me on

>

Sulphasalazine,Leflunomide,Dihydracodeine,Etoricoxib,Amitriptyline,Omepr\

\

> azole and Paracetamol 6 years ago and I'm still on them now(they have

> now ceased to work). After a lot of kicking and screaming, I was

finally

> given Humira last year, but after 5 injections, I became much worse

and

> my B.P. went through the roof. He wanted me to go on Enbrel

> immediately, but I said no and that I wanted my body to get rid of the

> drug before I put anything else in it.

>

> So last friday(13March 09) I had my first injection of Enbrel 50mg, my

> next one being this friday. Up til now, I feel no different,but it's

> early days.

>

> Has anyone been on this drug for any length of time and seen a marked

> improvement? I know it won't change my hands or feet or even my knees.

> Think I'm just hoping that I will just feel well, that would be a

start.

>

> I have a lovely saint of a husband, who has gone through all this with

> me, 2 sons, one of them is currently serving in Afghanistan, the other

> who takes me wherever I need to go, and a gorgeous 5 year old

> grandaughter who keeps me sane and gives me the reason to keep

fighting.

>

> Thank you for allowing me this rant, and I hope to hear from some of

you

> soon.

>

>

>

>

>

>

[Guest guest]

Hi Barbara,

Thank you so much for your kind words and encouragement. Having read through

some of the posts,I know I've done the right thing by joining up. We seem to be

all over the world, but RA has no bounderies. 

Hope to have some good news to share soon.

Kind Regards

x 

From: Barbara <bcreedon@...>

Subject: [ ] Re: ENBREL

Date: Thursday, 19 March, 2009, 1:51 AM

Hi :

I want to wish you a warm welcome to our group of caring, informative,

and kind people. You have come to the right place to vent, write, etc.

I wish you lots of luck with your Enbrel medicine. I know so many here

take it, and are thrilled with the way it works for them.

I am sorry your RA has been so bad, and that you suffer so much with it.

I pray there are better days ahead for you, and that you will be pain

free.

Hugs,

Barbara

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

wrote:

>

>

> Hi All,

>

> I have just come on board tonight so please bare with me while I find

my

> way around. I'll introduce myself first.

>

> My name is , I am 54 and have had this horrible disease for 12

> years now. For the first 5-6 years I managed to continue working as a

> nurse/manager of a Nursing Home for the elderly, which I absolutely

> adored. About 6 years ago I had a really bad flare up and had to be

> hospitalised for the first time. For the first 6 years I was only on

MXT

> 22mg,then it ceased to work. I have had long periods confined to a

> wheelchair since then, have bad deformities in both hands and both

feet,

> and have it in both shoulders, knees,wrists, in fact all over. I badly

> need 2 knee replacements, but have been told I'm too young!!!!! That's

> strange, because I feel 80 years old.

>

> My Rheumatologist, decided to put me on

>

Sulphasalazine, Leflunomide, Dihydracodeine, Etoricoxib, Amitriptyline, Omepr\

\

> azole and Paracetamol 6 years ago and I'm still on them now(they have

> now ceased to work). After a lot of kicking and screaming, I was

finally

> given Humira last year, but after 5 injections, I became much worse

and

> my B.P. went through the roof. He wanted me to go on Enbrel

> immediately, but I said no and that I wanted my body to get rid of the

> drug before I put anything else in it.

>

> So last friday(13March 09) I had my first injection of Enbrel 50mg, my

> next one being this friday. Up til now, I feel no different,but it's

> early days.

>

> Has anyone been on this drug for any length of time and seen a marked

> improvement? I know it won't change my hands or feet or even my knees.

> Think I'm just hoping that I will just feel well, that would be a

start.

>

> I have a lovely saint of a husband, who has gone through all this with

> me, 2 sons, one of them is currently serving in Afghanistan, the other

> who takes me wherever I need to go, and a gorgeous 5 year old

> grandaughter who keeps me sane and gives me the reason to keep

fighting.

>

> Thank you for allowing me this rant, and I hope to hear from some of

you

> soon.

>

>

>

>

>

>

[Guest guest]

Hi

Welcome to the group. I have learned so much from the people here and

can find information on most any subject. I don't know how she does it but I

am glad she does. Anyway I am a nurse as well but have been disabled since

2007. I hate not working but just could no longer do it. I was on Enbrel for

about 8 months and never really noticed much difference. I am now on Humera

and I know it helps my knees. Nothing seems to help my hands but I will take

what I can get.

Feel free to ask any question because if you have a question most likely

someone has either has the same question or the answer to it. Again Welcome

to the group.

Heidibug

On Wed, Mar 18, 2009 at 8:29 PM, sarahledsom <sarahledsom@...>wrote:

>

> Hi All,

>

> I have just come on board tonight so please bare with me while I find my

> way around. I'll introduce myself first.

>

> My name is , I am 54 and have had this horrible disease for 12

> years now. For the first 5-6 years I managed to continue working as a

> nurse/manager of a Nursing Home for the elderly, which I absolutely

> adored. About 6 years ago I had a really bad flare up and had to be

> hospitalised for the first time. For the first 6 years I was only on MXT

> 22mg,then it ceased to work. I have had long periods confined to a

> wheelchair since then, have bad deformities in both hands and both feet,

> and have it in both shoulders, knees,wrists, in fact all over. I badly

> need 2 knee replacements, but have been told I'm too young!!!!! That's

> strange, because I feel 80 years old.

>

> My Rheumatologist, decided to put me on

> Sulphasalazine,Leflunomide,Dihydracodeine,Etoricoxib,Amitriptyline,Omepr\

> azole and Paracetamol 6 years ago and I'm still on them now(they have

> now ceased to work). After a lot of kicking and screaming, I was finally

> given Humira last year, but after 5 injections, I became much worse and

> my B.P. went through the roof. He wanted me to go on Enbrel

> immediately, but I said no and that I wanted my body to get rid of the

> drug before I put anything else in it.

>

> So last friday(13March 09) I had my first injection of Enbrel 50mg, my

> next one being this friday. Up til now, I feel no different,but it's

> early days.

>

> Has anyone been on this drug for any length of time and seen a marked

> improvement? I know it won't change my hands or feet or even my knees.

> Think I'm just hoping that I will just feel well, that would be a start.

>

> I have a lovely saint of a husband, who has gone through all this with

> me, 2 sons, one of them is currently serving in Afghanistan, the other

> who takes me wherever I need to go, and a gorgeous 5 year old

> grandaughter who keeps me sane and gives me the reason to keep fighting.

>

> Thank you for allowing me this rant, and I hope to hear from some of you

> soon.

>

>

[Guest guest]

No problem, just glad you joined us.

Heidibug

On Thu, Mar 19, 2009 at 4:35 PM, sarahledsom <sarahledsom@...>wrote:

>

> Hi Heidi,

>

> A big thank you to you for your welcome. Just wish I'd known about this

> group earlier. What a lovely bunch of people! Like you Heide, I really

> miss working, in a way it's been like a bereavement,a great loss. I've

> always felt you lose your identity almost.

>

> Anyway, no more of that doom and gloom, I've got a whole new world

> opened up to me now. I hope I can help others along the way and make a

> few friends too.

>

> Think it may be because I'm in the UK, but the date on this is fri mar

> 20 at 08.19am whereas here it is still thu at 8.29pm. Tomorrow, I'll be

> doing my 2nd Enbrel injection and hoping for a change in my condition,

> even if it's minimal.

>

> Humira did nothing for me, but I sincerely hope it does for you.

>

> Heidi, thank you again for taking the time to chat, much appreciated.

>

> Kindest regards

>

>

>

> >

> > Hi

> > Welcome to the group. I have learned so much from the people here and

>

> > can find information on most any subject. I don't know how she does it

> but I

> > am glad she does. Anyway I am a nurse as well but have been disabled

> since

> > 2007. I hate not working but just could no longer do it. I was on

> Enbrel for

> > about 8 months and never really noticed much difference. I am now on

> Humera

> > and I know it helps my knees. Nothing seems to help my hands but I

> will take

> > what I can get.

> > Feel free to ask any question because if you have a question most

> likely

> > someone has either has the same question or the answer to it. Again

> Welcome

> > to the group.

> > Heidibug

> >

> > On Wed, Mar 18, 2009 at 8:29 PM, sarahledsom sarahledsom@...wrote:

>

> >

> > >

> > > Hi All,

> > >

> > > I have just come on board tonight so please bare with me while I

> find my

> > > way around. I'll introduce myself first.

> > >

> > > My name is , I am 54 and have had this horrible disease for 12

> > > years now. For the first 5-6 years I managed to continue working as

> a

> > > nurse/manager of a Nursing Home for the elderly, which I absolutely

> > > adored. About 6 years ago I had a really bad flare up and had to be

> > > hospitalised for the first time. For the first 6 years I was only on

> MXT

> > > 22mg,then it ceased to work. I have had long periods confined to a

> > > wheelchair since then, have bad deformities in both hands and both

> feet,

> > > and have it in both shoulders, knees,wrists, in fact all over. I

> badly

> > > need 2 knee replacements, but have been told I'm too young!!!!!

> That's

> > > strange, because I feel 80 years old.

> > >

> > > My Rheumatologist, decided to put me on

> > >

> Sulphasalazine,Leflunomide,Dihydracodeine,Etoricoxib,Amitriptyline,Omepr\

> \

> > > azole and Paracetamol 6 years ago and I'm still on them now(they

> have

> > > now ceased to work). After a lot of kicking and screaming, I was

> finally

> > > given Humira last year, but after 5 injections, I became much worse

> and

> > > my B.P. went through the roof. He wanted me to go on Enbrel

> > > immediately, but I said no and that I wanted my body to get rid of

> the

> > > drug before I put anything else in it.

> > >

> > > So last friday(13March 09) I had my first injection of Enbrel 50mg,

> my

> > > next one being this friday. Up til now, I feel no different,but it's

> > > early days.

> > >

> > > Has anyone been on this drug for any length of time and seen a

> marked

> > > improvement? I know it won't change my hands or feet or even my

> knees.

> > > Think I'm just hoping that I will just feel well, that would be a

> start.

> > >

> > > I have a lovely saint of a husband, who has gone through all this

> with

> > > me, 2 sons, one of them is currently serving in Afghanistan, the

> other

> > > who takes me wherever I need to go, and a gorgeous 5 year old

> > > grandaughter who keeps me sane and gives me the reason to keep

> fighting.

> > >

> > > Thank you for allowing me this rant, and I hope to hear from some of

> you

> > > soon.

> > >

> > >

[Guest guest]

hi my son has 2 kinds of JRA and he as been on ENBREL for 5 months now the

headaches went away but some times he still gets REALLY fatigued ...good luck I

hope this helps

charity and elijah 8 poly and spondy

> From: Mathena@... <Mathena@...>

> Subject: Enbrel

> " Utah Kids " <utahkids >,

> Date: Sunday, March 29, 2009, 5:48 PM

> Jordon started his Enbrel shots on Thursday 26th, and he has

> been sleeping in the middle of the day, everyday, and he has

> had some headaches are these common side effects does anyone

> know?

>

> , Bryon, Jordon 9 (Type 1 Diabetes Mellitus, SPD,

> Epilepsy, JRA, DD), 7 (Epilepsy, Ketogenic Diet, CMV,

> ODD, DD)

>

>