Enbrel

[Guest guest]

In a message dated 6/17/2001 8:00:41 PM Eastern Daylight Time,

emmaandshila2home@... writes:

<< Changing subjects has any of you tried to hide the severity

of this illness. >>

Marcy - there are days at work when I can hide it from everyone but one

co-worker. She can look at my face and see the pain I'm in and then if she

asks if I'm in pain I find it hard to hold back the tears. But, yes, I know

what you mean, if my boss asks how I am, I put on a big smile and say

" great! " even if I feel my knee sockets are ripping apart.

[Guest guest]

My daughter has been on Enbrel for about 2 months and is experiencing a lot

of muscle aches from it. She takes 25 mgs. twice a week with 17.5 mgs

methotrexate. She's 15 yrs. old and is 125 lbs. so she's on the adult dosage

- - but has anyone taken a lower dose and had success with it helping the

arthritis?

If anyone can give me any insight into this I'd really appreciate it. Thanks.

[Guest guest]

Hi! My son is 14 and weighs about 98 lbs. They increased him from

12.5mg to 25 mg twice a week about a month ago. He doesn't seem

to have a problem with the increased dose but he was doing just great

on the 1/2 dose as well. Interesting about the muscle aches, I do think

my son has issues with this, but I didn't associate it with the Enbrel. I

always thought it was the 4 hours of basketball followed by the 18

holes of golf... makes my muscles hurt just thinking about it! He also has

lots of hamstring problems, which I think it due to lack of stretching. It

would be interesting to know if others have muscle aches?

Thanks, Jana

[Guest guest]

Hi, Jana! When first went to his pt she said that boys about our sons

age (14) are commonly known to have hamstring problems; has to do with a

lack of elasticity in the muscle she said. must stretch out quite a

bit before sports, the pt gave him special things to do. does not take

Enbrel so his muscle aches are not from that. I agree that it has to do with

the stretching. Also, remember, the tendons can get inflamed from arthritis

and since those are all around the muscles that could be the source of pain.

Chris' rhuemy said that he has alot of tendonitis from the arthritis.

Michele

Re: enbrel

Hi! My son is 14 and weighs about 98 lbs. They increased him from

12.5mg to 25 mg twice a week about a month ago. He doesn't seem

to have a problem with the increased dose but he was doing just great

on the 1/2 dose as well. Interesting about the muscle aches, I do think

my son has issues with this, but I didn't associate it with the Enbrel. I

always thought it was the 4 hours of basketball followed by the 18

holes of golf... makes my muscles hurt just thinking about it! He also has

lots of hamstring problems, which I think it due to lack of stretching. It

would be interesting to know if others have muscle aches?

Thanks, Jana

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[Guest guest]

Thanks, Michele. I will push him to do the stretching. I sure hope

he outgrows the hamstring problem, it is very painful.

Thanks again, Jana

[Guest guest]

Jana, I had problems with hamstrings when I was in my teens, as a matter

of fact, that was the first signs of problems that I had jra. I out grew

them. Lots of stretching and staying Mobil too.

[Guest guest]

P.S.

Lots of muscle aches! usually during and before rain storms and during

the change of climite/seasons!

On Fri, 27 Jul 2001 15:50:58 -0700 DONALD A MORSE <dam755@...>

writes:

>

> Jana, I had problems with hamstrings when I was in my teens, as a

> matter of fact, that was the first signs of problems that I had jra.

> I out grew them. Lots of stretching and staying Mobil too.

>

[Guest guest]

I have muscle aches now which ive had for 2 days. Ive just come back from

holiday and I was thinking I had just over exerted myself but if others have

the aches than I think it must be from our illness as I am not on embrel.

Vicky

[Guest guest]

Dear Vicky, The muscle aches probably are from inflamation in the joint than

then affects all the connective tissues ... muscles , tendons,etc. Over

extending yourself is a good probable cause but this can occur even if your put

a flared joint to rest. So don't beat yourself up about having fun on your

holiday , chances are that if you had just sat around and did nothing ,your

aches would be there anyway. I too, as a teen, tried to lay blame on anything

and everything for why I hurt and thought I could figure out what caused it and

simply not do that activity again. Good reasoning but it doesn't work with

Arthritis .

Be smart understand that you have to try to manage your Arthritis but don't give

up on all those fun activities, just try to modify them so you can protect your

joints and have a great time all at once. Sometimes I still over extend myself ,

it's hard not to do, but ussually it's for something I felt really important or

for something that gave me lasting memories of great times that I can now look

back on and say YES I did that( I was in bed for the next two days hahahaha )

but it was worth it !!!!!!KEEP SMILIN HUN :):):)Tree

Re: enbrel

I have muscle aches now which ive had for 2 days. Ive just come back from

holiday and I was thinking I had just over exerted myself but if others have

the aches than I think it must be from our illness as I am not on embrel.

Vicky

[Guest guest]

Re: Hotline number for Enbrel . It is 1-888-436-2735. Good Luck.

[Guest guest]

We just found out that our insurance doesnt pay for Embril-so we have decided

to go with the MTX shots. My husband is also taking 5mg prednisone four times

daily and this has improved his mobility tremendously. I dont like him being

on that every day but he didnt take one dose one day and woke up stiff. If he

takes the mtx does he discontinue the relefen and prednisone? It just seems

like he is taking so much stuff but it IS helping him.

Thanks for letting me post here

Ellie -

Stars and Stripes Forever

[Guest guest]

> I too just received my prescription for Enbrel

My doc says once I start this I can quit all other meds.

, i am still on anti-inflammatories and pain meds. It depends on

how bad your arthritis is if you can " give up all other meds " . Some

people are on a combo of Enbrel and mtx.

I would like to know if anyone has had any bad experiences with

Enbrel (serious infections, reactions to injection sites, etc.).

Some get an injection site reaction about the forth or fifth shot

where all injection sites to date raise up red irritated but fade

after a few days.

Also, does Enbrel do anything for the psoriasis (I only have it in

my fingernails and they are finally growning back nice)?

Personnally the Enbrel has done zip, zilch, nada for the psoriasis.

Take care,

PatB

[Guest guest]

Hi -- I am not on Enbrel, but if I had a doctor who was as unresponsive

as yours seems to be, I'd soon be looking for another doctor. I can't believe

he's left you on your own about this. -- Jan O', Alaska

Sa wrote:

> I too just received my prescription for Enbrel. MTX did nothing for me except

clear up my fingernails. My doc says once I start this I can quit all other

meds. I remember reading from past posts what great results people have had

with Enbrel. After reading all of the literature that is included in in the

dosing package I have become a bit intimidated. I would like to know if anyone

has had any bad experiences with Enbrel (serious infections, reactions to

injection sites, etc.). They mention sepsis that can cause death. Can someone

please tell me what sepsis is. I would also like to know if it is difficult to

give the injection and if it is painful. My doc gave me the video and

literature and said that it was very explanatory but I don't feel comfortable

giving my first injection by myself. Also, does Enbrel do anything for the

psoriasis (I only have it in my fingernails and they are finally growning back

nice)? Thanks.

>

>

[Guest guest]

In a message dated 9/20/01 5:25:19 PM Central Daylight Time,

PBias@... writes:

> Some

> people are on a combo of Enbrel and mtx.

>

>

>

>

>

I am on a mix of Enbrel and Arava, plus I still need my pain meds and muscle

relaxants.

Take care,

D in MN

[Guest guest]

In a message dated 09/20/2001 6:25:15 PM Eastern Daylight Time,

LovetheGiants@... writes:

<< We just found out that our insurance doesnt pay for Embril >>

Ellie - Check on that again. It might be that you have to go thru other

treatments first (such as MTX) before being approved for enbrel. Also, make

sure the rheumy says it's RA, not PA - you might get approved yet. But MTX

has worked ok for me. I now have liver problems so I need to wean off and am

starting enbrel. You can also appeal your ins. company's decision. They can

tell you how to do that.

Good luck,

------

Moderator 2 cents: My doc called it PA---poly arthritis severe with sero

negative and psoriasis. Also, that mtx irritated the liver. PatB

[Guest guest]

In a message dated 09/20/2001 6:25:44 PM Eastern Daylight Time,

PBias@... writes:

<< It depends on

how bad your arthritis is if you can " give up all other meds " . Some

people are on a combo of Enbrel and mtx.

>>

Yes, I'll be staying on MTX with the enbrel for now - eventually weaning off

the MTX (I hope!) and will stay on Vioxx.

[Guest guest]

In a message dated 09/20/2001 6:26:19 PM Eastern Daylight Time,

wizard@... writes:

<< Can someone please tell me what sepsis is >>

- sepsis/septisemia (sp?) is a bacterial infection of the blood. It

is not easy to get, but you could possibly get it if you used an unsterile

needle - highly unlikely though. I got sepsis after surgery for a kidney

stone when the laser instrument broke while it was inside me. Now whether it

was from the instrument (how can they be sure it was sterilized INSIDE?) or

from the stone itself, no one knows. But I had fevers of 105, needed a week

in the hospital on IV antibiodics, and developed one HELL of a flare. (I

didn't realize how truly dangerous this all was until my urologist told me on

a follow up visit " well, last time I saw you, you were trying to DIE on me " ).

So yes, sepsis is dangerous, but unless I'm mistaken, it's highly unlikely

you'd get it from an enbrel injection.

[Guest guest]

Injections are really easy....I was surprised, but my Dr. sat with me while

I did the first one. I had no side effects at all, but, as I've written

before, not much help either. Think positive. It's been working great on

some people.

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

From: " Sa " <lesliesa@...>

My doc gave me the video and literature and said that it was very

explanatory but I don't feel comfortable giving my first injection by

myself.

>

>

[Guest guest]

Thanks for the info. What I meant is that I am not covered for any pharmacy

stuff, I get a 10-30 percent discount on drugs, but this does not count

toward my deductable. 30% even is not affordable when its $1,000 a month for

the drug. We will try the MTX for now and cross our fingers. THanks so much

Ellie -

Stars and Stripes Forever

[Guest guest]

Jan,

You know the scary thing is that this is my new doctor. I fired the one I had

before cause he kept increasing my prednisone and wanted me to stay on mtx,

which wasn't helping one bit! Tuesday was my 1st appointment with the new

rheumy. She was at least a bit more informative (she explained all of the side

effects, etc. - something that my previous doc failed to do). She had a brusk

personality though. I wish I could find a doctor that can be sympathetic to my

needs and understand that I really am in pain. She refused to refill my pain

meds. Instead she prescribed me celebrex. I told her before that I have taken

celebrex and it doesn't help. I am just hoping that I get the enbrel soon and

that it works. I think I am going to make an appointment with my GP Dr. to do

the first injection. He is the one who suggested I go on Enbrel and he seems

genuinely concerned with my health. I guess I have very bad luck with

rheumatologists. I don't want to keep switching docs though.

>

-----

, You can ask your GP doc for the pain meds. With the DEA monitoring

prescriptions it means one less script that a Rheumy writes. Spreads it around

so to speak:-) PatB

[Guest guest]

I am on a mix of Enbrel and Arava, plus I still need my pain meds and muscle

relaxants.

It is strange that you say that because my doctor made it sound like that enbrel

was so wonderful that I wouldn't have to take my pain meds or the prednisone. I

think she is very much against the " narcotic pain meds " as she put it. I told

her that I had problems sleeping sometimes because of the pain and she seems to

think that 2 celebrex before bed may help. So far it hasn't. I am really

beginning to hate doctors.

----------

Enbrel is wonderful relatively speaking. Before Enbrel I was on 40 Oxycontin

with supplements for major pain and with Enbrel i have cut back to 10mg Oxy AS

NEEDED with some days none and some days more. But, my PA is all over. For

someone with feet or hands only maybe the Enbrel does allow for stopping other

meds. Each of us are different. Each doc is different. PatB

[Guest guest]

>

> << Can someone please tell me what sepsis is >>

> - sepsis/septisemia (sp?) is a bacterial infection of the

blood. It

> is not easy to get, but you could possibly get it if you used an

unsterile

> needle - highly unlikely though

,

Thanks. I know that they have to put all of the possible side

effects on the literature even if there is a very small chance of it

actually happening to you but anything that may lead to death is a

bit scary.

[Guest guest]

My insurance co. turned me doen the 1st time, when my dr. gace dx as

rhemotoid. Then he put it through again, calling it " inflammatory

arthritis. " They ok'd it immediately. It's all a game, as if we'd want to

stick ourselves with needles if we weren't sick!

Re: [ ] Enbrel

> In a message dated 09/20/2001 6:25:15 PM Eastern Daylight Time,

> LovetheGiants@... writes:

>

> << We just found out that our insurance doesnt pay for Embril >>

> Ellie - Check on that again. It might be that you have to go thru other

> treatments first (such as MTX) before being approved for enbrel. Also,

make

> sure the rheumy says it's RA, not PA - you might get approved yet. But

MTX

> has worked ok for me. I now have liver problems so I need to wean off and

am

> starting enbrel. You can also appeal your ins. company's decision. They

can

> tell you how to do that.

> Good luck,

>

>

> ------

> Moderator 2 cents: My doc called it PA---poly arthritis severe with sero

negative and psoriasis. Also, that mtx irritated the liver. PatB

>

>

>

>

[Guest guest]

Hi .....I have PA and have been on Enbrel for 2 months. It has cleared

95% of the psoriasis I had although I did not have severe evolvement. I am

basically on 2 drugs now. Enbrel and Klonopin (an anti-anxiety drug) and an

occasional Tylenol or Advil. The effect of Enbrel was immediate and stunning.

However there is one disappointment. I thought Enbrel had stopped the advance

of the disease. Before only my hands were affected. Now it is involving my

feet. The PA may have affected my feet before I started Enbrel since it was a

particularly acute flare that forced me to start Enbrel and I just didn't notice

a minor involvement of my feet because of the pain an the other meds. In any

event I believe I would be a real mess right now without Enbrel. This is a

tenacious and exasperating disease. I'm hoping for the best. And really. The

injections are nothing and you may be freed of other medications. Just have an

office nurse supervise you on your first injection if you're apprehensive. I

did. R.E.

[ ] Enbrel

I too just received my prescription for Enbrel. MTX did nothing for me except

clear up my fingernails. My doc says once I start this I can quit all other

meds. I remember reading from past posts what great results people have had

with Enbrel. After reading all of the literature that is included in in the

dosing package I have become a bit intimidated. I would like to know if anyone

has had any bad experiences with Enbrel (serious infections, reactions to

injection sites, etc.). They mention sepsis that can cause death. Can someone

please tell me what sepsis is. I would also like to know if it is difficult to

give the injection and if it is painful. My doc gave me the video and

literature and said that it was very explanatory but I don't feel comfortable

giving my first injection by myself. Also, does Enbrel do anything for the

psoriasis (I only have it in my fingernails and they are finally growning back!

nice)? Thanks.

[Guest guest]

I am confused because I am diagnosed with psoriatic arthritis and I called my

insurance to see if it was covered and they told me that it was on my preferred

drug list and that I could order it directly from them with a much lower copay.

Does it's approval depend on your diagnosis? My rheumy told me that it was

approved for pa.