starting enbrel

April 4, 2002

Ronnie E.,

Thank you so much for your sympathetic post. I am glad your PA was

identified quickly. I was diagnosed the day I saw my Rheumy, but that

was back in 1988 and all these new drugs were not available then. And

my getting approved for Enbrel so quickly was that I had gone through

every drug available (gold right on through methotrexate).

Reading your post made me feel better and to not give up. I get my 4th

dose tomorrow and I will be positive. It is just so hard to be positive

when you look forward to something and hear people say " it has changed

my life " . I was talking to my husband and he suggested going through 3

months of the treatment then making the decision with my Rheumy to stay

on it or not.

Darvocet is the only drug right now my stomach can tolerate. How I wish

I could take Vicodin or Tylenol/Codeine, but my stomach just says no. I

just had knee surgery and they couldn't even give me morphine or Demoral

because of my stomach. I have a very low tolerance for pain medication

because of all the drugs I have taken for the PA over the years. The

pain says yes, the stomach says no. Zantac is the only thing that saves

me.

But thank you again for answering, and let's hope I am not one of those

people that Enbrel doesn't work for.

Thanks,

Angera

-----------

Moderator note: It took me over 2 years to stop taking the pain meds after

starting Enbrel. Give it a good chance to work. Patb

April 4, 2002

--- caljersey@... wrote:

> Ronnie E.,

>

> I am a little behind in reading my posts, and when I

> came to yours I had

> to ask you a couple of questions, if you don't mind.

>

> I started my Enbrel treatment and have had 3 shots

> already. I feel no

> different, may be even worse. I sat up in bed last

> night at midnight

> and cried my eyes out, because I had pain where I

> never had pain before.

> I am now taking 2 Darvocets every 6 hours instead of

> 1.

>

> You said you had immediate improvement when you

> started the drug. Are

> you talking about the first dose, first couple of

> weeks, month. . . . .?

> I even called my Rheumy and she said give it time.

> Like you said, it is

> suppose to be the " miracle drug " . I haven't seen

> the miracle yet.

>

> Am I asking or should I say expecting too much too

> soon? I am just

> praying that I am not in the percentage of people

> where it does not

> work.

>

> Hoping to hear from you or anyone else who is on

> Enbrel that can give me

> some type of timeline as to when to expect some

> relief. I know everyone

> is different, but it seems from reading the posts,

> people sing such high

> praises for the fast relief.

>

> Thanks,

> Angera

>

> Hi Angera,

I have just had my 6th injection of Enbrel and I'm

with you. Nothing yet. I guess I thought a miracle

would happen and I would get up in the morning and be

able to walk like a normal person. However, the

stiffness and pain are still there. As a matter of

fact, this morning one of my toes was hurting like

crazy. I was very uncomfortable with shoes on. I'd

never had pain there before. Holding a pen/pencil has

become very difficult for me. At one time I had

beautiful handwriting, now you can hardly read it. My

thumbs are the pits. I guess it could be worse. Let's

keep hoping and praying for the best. I've heard some

people experience weight gain. Know anything about

that? Unfortunately, that's one side effect I don't

want any part of - lol.

Hope tomorrow is a better day for you. I'll keep you

in my prayers.

Terri Boelhauf

>

__________________________________________________

April 5, 2002

Angera,

Don't be disappointed if you don't see immediate results with the Enbrel. I had

to wait 3 long months before I started noticing improvement. Granted it stinks

to have to wait that long for the medication to work but at least things got

better. Sometimes I do feel worse the day after my shot. I am not sure why

this is so but I know it usually passes. If you are like me your body may need

time to adjust to the medication. It seems for some reason every medication I

try takes the longest amount of time listed for it to have any effect on my

body. Some people were lucky and noticed immediate improvement after the first

couple injections. And who knows, some of that improvement could be

psychological. They were expecting to feel better and they did. Just because

Enbrel doesn't give you immediate results don't give up. I am sure in time you

will begin to feel better.

Take care,

>>> caljersey@... 04/03/02 02:56PM >>>

Ronnie E.,

I am a little behind in reading my posts, and when I came to yours I had

to ask you a couple of questions, if you don't mind.

I started my Enbrel treatment and have had 3 shots already. I feel no

different, may be even worse. I sat up in bed last night at midnight

and cried my eyes out, because I had pain where I never had pain before.

I am now taking 2 Darvocets every 6 hours instead of 1.

You said you had immediate improvement when you started the drug. Are

you talking about the first dose, first couple of weeks, month. . . . .?

I even called my Rheumy and she said give it time. Like you said, it is

suppose to be the " miracle drug " . I haven't seen the miracle yet.

Am I asking or should I say expecting too much too soon? I am just

praying that I am not in the percentage of people where it does not

work.

Hoping to hear from you or anyone else who is on Enbrel that can give me

some type of timeline as to when to expect some relief. I know everyone

is different, but it seems from reading the posts, people sing such high

praises for the fast relief.

Thanks,

Angera

April 5, 2002

Terri Boelhauf,

I am getting my 4th injection today and will let you know if something

happens. My husband suggested I ask my Rheumy if having a bad case of

Osteo Arthritis and Osteoporosis might be a culprit. I don't think ( I

have been wrong) Enbrel helps with Osteo. Or may be it will take a

while to kick in because of the Osteo. I don't know any more, I am just

trying to think of anything that could be preventing it from working. I

am just so happy for the people that it is helping. That some are

getting relief from this awful pain.

I was worried also about gaining weight because I have been on a diet

and lost 50 lbs. and was worried about gaining. So far no weight has

come back and I am still losing. As a matter of fact, I have even lost

my appetite a little. So I guess it is working that way, lol.

Hope you have a good day.

Angera

April 5, 2002

,

Thank you for the encouragement. I too feel lousy the day after the

shot. I am nauseous and tired. One good thing is that I do not get a

reaction at the injection sight. Not a red mark, swelling or anything.

I guess that is something to be thankful for.

Like you, medications take a while to take effect on me. Sometimes when

I need antibiotics, I have to go 2 rounds of it because it doesn't get

rid of whatever I have the first time.

I won't give up. I get my 4th shot today, so we shall see. I will go

the 3 months, then if no change, see what my Rheumy has to say. I can't

see using it past that time with no results when someone else who is

waiting to start on it could benefit from it.

Angera

July 9, 2004

enbrel is great...injecting in the stomach seems to work for me...and it is

very easy and painless...good luck.

ginny

July 9, 2004

Joy,

The biggest pointer I can give is not to tense up when you put the

needle in, just relax. I know it's easier said then done when you

are just starting out, but it does help. The needles are a lot

smaller now which also helps.

For me the stomach is the easiest place to give the injection and

the least painful. I don't feel anything. It took me a long time

to try the stomach because it just seems like it will hurt a lot

more, but it doesn't. Then again I have a big target so it makes it

easy. :-)

Remember and don't get excited if you have any injection site

reactions. They seem to be common with most people. Mine doesn't

do it as much as it did last year when I started Enbrel, but I get

one every once in awhile. They are pretty shades of black and blue

and green, for me they helped me to remember where I gave the last

shot so I could stay away from it. I switch from my right leg to my

left leg and then to my right side of the stomach and the left side

of the stomach, and then back to the right leg and so on.

Good luck and in a couple of weeks you will be a pro at it.

Dick

July 9, 2004

I would like to know what had occurred that led to starting Enbrel.

Were you on MTX and it wasn't effective or you couldn't tolerate it

or did you go directly to Enbrel?

I have been on MTX for 6 months and am up to 15mg per week. It had

been effective in preventing joint inflammation so that I haven't

required cortesone injections, but I usually have one flare per month

that affects the tendons in my hand. So far I have had no side

effects.

> Wish me luck I am going tuesday to have the nurse show me how to

inject

> enbrel. Can any of you give me any pointers on starting on this med

and

> the easiest way to inject or which site works best etc...

> Thanks,

> Joy

July 9, 2004

Good for you Joy -- The needles are so small that I don't even feel it in

my belly. I haven't tried any other sites except my upper arm when someone

else gave me the first few. I was unable to get the top off the vial and my

fingers weren't limber enough to do it at first but after 3 doese I could do

my own. Good Luck and try not to be nervous. Cheri

July 12, 2004

I alternate my legs. Injection is nothing really. The new system and

smaller needles are a big improvement and it wasn't a problem before. I

always leave the kit out of the fridge for about 20 minutes before

injection. Also I do the injection about a half hour before I go to bed

then read a book.

March 9, 2005

Tina, Enbrel saved my life. I will pray for you that it works for you too !

nne

aussiese37 <aussiese37@...> wrote:

I am very new to this talking online or chatting but after dealing

with PA and no one else I am around understands I feel I need to talk

to others who go through the pain of just moving and changing meds. I

have just taken my second enbrel shot and would love to talk to

others to see how it worked for them.Any replys are welcome.Good Luck

and God bless. Tina

March 10, 2005

Hi Tina,

Good luck with the Enbrel. It's brilliant for me !

n

France

[ ] starting enbrel

I am very new to this talking online or chatting but after dealing

with PA and no one else I am around understands I feel I need to talk

to others who go through the pain of just moving and changing meds. I

have just taken my second enbrel shot and would love to talk to

others to see how it worked for them.Any replys are welcome.Good Luck

and God bless. Tina

March 10, 2005

Welcome Tina,

I am not new to the group, but new to Enbrel as well. Let's hope

this our magic potion!

Tamara

>

> I am very new to this talking online or chatting but after dealing

> with PA and no one else I am around understands I feel I need to

talk

> to others who go through the pain of just moving and changing

meds. I

> have just taken my second enbrel shot and would love to talk to

> others to see how it worked for them.Any replys are welcome.Good

Luck

> and God bless. Tina

March 10, 2005

Hi and a BIG THANKS to all who have started helping me with questions I had and

just sharing how they feel. I would have never expected to hear from so many. I

hate any of us have to go through this but it's nice to know now that I'm not

alone. Tina

" marian.green " <marian.green@...> wrote:

Hi Tina,

Good luck with the Enbrel. It's brilliant for me !

n

France

[ ] starting enbrel

I am very new to this talking online or chatting but after dealing

with PA and no one else I am around understands I feel I need to talk

to others who go through the pain of just moving and changing meds. I

have just taken my second enbrel shot and would love to talk to

others to see how it worked for them.Any replys are welcome.Good Luck

and God bless. Tina

March 11, 2005

Hi Tina,

Welcome to the group. I started Enbrel a couple of months back and have

shown some improvement. Not as much as I had hoped but I'm slowly but surely

getting there. I have been told by my Rheumy to stop for a week or so just now

because I've had a bad cold for over three weeks and I can't shake it off. Some

people notice almost immediate results from it, some take a little longer,

some don't get too much benefit from it and a very odd person (and Fran If your

reading this, I don't mean that you are a very odd person! lol) has a bad

reaction to it. Most people taking it though swear by it so hopefully you will

be one of those.

I hope you find the group beneficial to you.

Take care,

February 23, 2008

had another rheumy visit yesterday and she is finally well enough to on

Enbrel!! We have a one time exception from the ins. co then have to get

pre-cert approval for mail away, which I would guess is the norm.

So much time was taken for her appt yesterday I felt rushed once the rheumy told

us about starting Enbrel (she had taken about an hr for a short appt already)-

but I figure there are plenty of experts here!

Any special advice or suggestions? Has anyone been able to stop Celebrex or mtx

after being on Enbrel? I have noticed as her dose of mtx has gone up,

has been sick more, so with the Enbrel added, and her PIDD (immune def) we are

concerned about even more respiratory infections...(she chatted with someone who

said when they stopped mtx, it made all the difference)...if we could eventually

do away with mtx, well...

Do your kids take Enbrel on the same day as their mtx, or on different days?

Is the auto-injector pretty straightforward? Does the stomach or elsewhere tend

to be the best site? Any thing we/she should know about the injection, problems

to watch for, etc?

Any words of wisdom would be appreciated. We are thankful she is finally

starting the Enbrel and hoping it will be the answer for her!! (saying prayers,

crossing fingers and toes)

So thankful we have you all to turn to - thanks in advance.

and

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

Never miss a thing. Make your homepage.

February 23, 2008

congrats on the enbrel. My daugter started when she was 2 and is now 4 doing

very well on enbrel. we were initally on methotrexate as well, but weaned off

of that about 12 months ago. we did stagger the shots, she was on enbrel 2

times per week and methotrexate injection 1 time per week, she had a shot every

2-3 days. We tried emla cream but found it too messy and called too much

attention to the whole process. Jana controls the choice of leg, the choice of

band aid, the wiping of the alcohol swab, then I repeat the wipe and she holds

the wipe and the needle cover. lately she has also wanted to help push the

plunger.

we have not used any auto system, the needle that comes with our enbrel kits

is very tiny and does not seem to bother her when i do the shots. I don't know

how old your daughter is, but we have managed pretty well with Jana just making

the shot a typical part of her week, I do it where ever she is at the time, she

hardly has to stop playing. I don't do it in her bedroom or if she is very

tired and ready for a nap.

good luck, and Jana, 4 yo systemic JRA

nancy barnes <nancyb315@...> wrote:

had another rheumy visit yesterday and she is finally well

enough to on Enbrel!! We have a one time exception from the ins. co then have to

get pre-cert approval for mail away, which I would guess is the norm.

So much time was taken for her appt yesterday I felt rushed once the rheumy told

us about starting Enbrel (she had taken about an hr for a short appt already)-

but I figure there are plenty of experts here!

Any special advice or suggestions? Has anyone been able to stop Celebrex or mtx

after being on Enbrel? I have noticed as her dose of mtx has gone up, has

been sick more, so with the Enbrel added, and her PIDD (immune def) we are

concerned about even more respiratory infections...(she chatted with someone who

said when they stopped mtx, it made all the difference)...if we could eventually

do away with mtx, well...

Do your kids take Enbrel on the same day as their mtx, or on different days?

Is the auto-injector pretty straightforward? Does the stomach or elsewhere tend

to be the best site? Any thing we/she should know about the injection, problems

to watch for, etc?

Any words of wisdom would be appreciated. We are thankful she is finally

starting the Enbrel and hoping it will be the answer for her!! (saying prayers,

crossing fingers and toes)

So thankful we have you all to turn to - thanks in advance.

and

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

Never miss a thing. Make your homepage.

February 23, 2008

Both Rob and I have been on Enbrel.

They usually want you to be on methotrexate because it helps to prevent you

making antibodies against the Enbrel. So usually, mtx is continued while on

Enbrel.

We both got relief after about 2 weeks on the med.

Rob never had any reactions. I used to get quarter to half dollar sized raised,

red areas around the injection. Sometimes it would also be a little itchy. A

little benadryl cream took care of it.

Rob has used the auto-injector and prefers that method. If is on the 50mg

dose that is pre-mixed, it may burn significantly as it goes in. I had that

problem, It seemed to burn like hot sauce as it went in. Worse for me than the

Humira, which also burns going in. On the other hand, the 25 mg dose you mix

yourself did not burn at all. At least for me.

Rob likes to use his thigh exclusively. I preferred my abdomen. will find

her 'favorite' spot.

You can also sign up for Enliven services, which are nurses that you can talk to

about Enbrel. I think that their number is 1-800-4Enbrel . They are great. They

will also call periodically and check to see how things are going.

You can also get free sharps containers, and a cool free travel kit with ice

pack. It came in really handy.

Hope this info helps!

and Rob 18 JAS

Re: starting Enbrel

> had another rheumy visit yesterday and she is finally

> well enough to on Enbrel!! We have a one time exception

> from the ins. co then have to get pre-cert approval for mail

> away, which I would guess is the norm.

>

> So much time was taken for her appt yesterday I felt rushed once

> the rheumy told us about starting Enbrel (she had taken about an

> hr for a short appt already)- but I figure there are plenty of

> experts here!

>

> Any special advice or suggestions? Has anyone been able to

> stop Celebrex or mtx after being on Enbrel? I have noticed

> as her dose of mtx has gone up, has been sick more, so

> with the Enbrel added, and her PIDD (immune def) we are

> concerned about even more respiratory infections...(she chatted

> with someone who said when they stopped mtx, it made all the

> difference)...if we could eventually do away with mtx, well...

> Do your kids take Enbrel on the same day as their mtx, or on

> different days?

> Is the auto-injector pretty straightforward? Does the

> stomach or elsewhere tend to be the best site? Any thing

> we/she should know about the injection, problems to watch for, etc?

>

> Any words of wisdom would be appreciated. We are thankful

> she is finally starting the Enbrel and hoping it will be the

> answer for her!! (saying prayers, crossing fingers and toes)

>

> So thankful we have you all to turn to - thanks in advance.

>

> and

>

> and

>

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

> Never miss a thing. Make your homepage.

>

February 23, 2008

,

she had a TB test 12/30 to be sure, and most recent chest x-rays were checked.

's is a 50ml auto-injector (she is not crazy about the auto-inject, as it

takes away an element of her control, but it is what it is). I am wondering if

she does 3 sub-Q sites and mtx site all on her stomach on the weekend, it might

be good if i could encourage her to try her thigh, although she has resisted to

this point. She tends to get site rxns so benadryl cream and ice pack might be

good to have ready. I suppose I should warn her it can burn....she prefers to

know than be surprised.

Thank you for the info, and again, I hope Rob is on his meds again really

soon!

snooksmama@... wrote: Both Rob and I

have been on Enbrel.

They usually want you to be on methotrexate because it helps to prevent you

making antibodies against the Enbrel. So usually, mtx is continued while on

Enbrel.

We both got relief after about 2 weeks on the med.

Rob never had any reactions. I used to get quarter to half dollar sized raised,

red areas around the injection. Sometimes it would also be a little itchy. A

little benadryl cream took care of it.

Rob has used the auto-injector and prefers that method. If is on the

50mg dose that is pre-mixed, it may burn significantly as it goes in. I had that

problem, It seemed to burn like hot sauce as it went in. Worse for me than the

Humira, which also burns going in. On the other hand, the 25 mg dose you mix

yourself did not burn at all. At least for me.

Rob likes to use his thigh exclusively. I preferred my abdomen. will

find her 'favorite' spot.

You can also sign up for Enliven services, which are nurses that you can talk

to about Enbrel. I think that their number is 1-800-4Enbrel . They are great.

They will also call periodically and check to see how things are going.

You can also get free sharps containers, and a cool free travel kit with ice

pack. It came in really handy.

Hope this info helps!

and Rob 18 JAS

Re: starting Enbrel

> had another rheumy visit yesterday and she is finally

> well enough to on Enbrel!! We have a one time exception

> from the ins. co then have to get pre-cert approval for mail

> away, which I would guess is the norm.

>

> So much time was taken for her appt yesterday I felt rushed once

> the rheumy told us about starting Enbrel (she had taken about an

> hr for a short appt already)- but I figure there are plenty of

> experts here!

>

> Any special advice or suggestions? Has anyone been able to

> stop Celebrex or mtx after being on Enbrel? I have noticed

> as her dose of mtx has gone up, has been sick more, so

> with the Enbrel added, and her PIDD (immune def) we are

> concerned about even more respiratory infections...(she chatted

> with someone who said when they stopped mtx, it made all the

> difference)...if we could eventually do away with mtx, well...

> Do your kids take Enbrel on the same day as their mtx, or on

> different days?

> Is the auto-injector pretty straightforward? Does the

> stomach or elsewhere tend to be the best site? Any thing

> we/she should know about the injection, problems to watch for, etc?

>

> Any words of wisdom would be appreciated. We are thankful

> she is finally starting the Enbrel and hoping it will be the

> answer for her!! (saying prayers, crossing fingers and toes)

>

> So thankful we have you all to turn to - thanks in advance.

>

> and

>

> and

>

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

> Never miss a thing. Make your homepage.

>

February 23, 2008

Leslile,

thank you for the input - Jana sounds like a trooper! I am glad the Enbrel is

working well for her.

For some reason, they ordered the auto-inject needles. already gives

herself her mtx shot and places her 3 subQ needles weekly, so she prefers the

sense of control of placement and how quickly the needle and med go in. The

auto-inject will be a new adjustment. I am hoping she has as much success as

Jana has with the Enbrel!

My best to you both,

(, 17, poly, cvid, migraines)

Farrington <lesliesufarr@...> wrote: