Re: Is Enbrel just as dangerous as MTX?

[Guest guest]

Hey Jersey....I know the feeling of wanting to break something, and then I stop because I will only hurt worse if I hit something or if I throw something, it's going to kill my shoulders and arms.

I know you can use the visualiaztion the others are talking about and visualize that you broke something. Go through all the steps like slow motion. I think we all go through periods of this kind of depression. Just hang in there, we're here....this will eventually subside or at least some of it.

I better close for this time. donna in Michigan.

Good luck in the future.

Donns

newjersey <newjersey23@...> wrote:

I'm about to do the clinical trial for Enbrel....But before I do I have tosign all these papers that say that there is a small chance that Enbrel cancause tumors? is that true or did I read it wrong? And it has those samescary side-effects like MTX....like there have been reports of death andstuff.... Reading that crap really just turns me off....And can I drinkalcohol if i'm on ENbrel? because I know its a " no no " with MTX.... Myright arm is killing me today and i'm all depressed over this....that andbecause I cant even lift weights anymore.......its just very depressing thati'm 25 and I used to be a big guy , strong and all...played basketball allthe time , football....And now I have a hard time putting my shirt on in themorning... I just had a thought that popped into my head today , About justfeeling this pain and almost to the point at which I feel like anybody canbeat me up now because it hurts so much to move my arm....Its not likeanybody wants to or anything , but just this insecure feeling is reallystartin to get its grip on me and causing all kinds of emotions..... I justfeel like a punk now.... I have to tell everybody " no, i cant do thatbecause my arms are hurting " ... And I HATE it so much because my family doesnot understand this pain and has no clue what it feels like...... I justfeel like breaking something right now....... u guys ever feel like that?Maybe if I drink a bottle of wine i'll feel better......And if your going toreply, please dont mention anything about seeing a therapist.... I've had itwith them...------------------------------------------------------------------------0% Introductory APR!Instant Approval!Aria Visa - get yours today.1/7102/4/_/494167/_/964544545/------------------------------------------------------------------------Please visit our new web page at:http://www.wpunj.edu/icip/paWe are currently discussing new chat times. moderates a chat on arthritis atwww.about.com on Thursday evenings, so check thatout in the meantime! E mail at RA@... for details.

[Guest guest]

Hi - Most of the posts I see are from women so it's quite something when I

see one from a male that moves me to tears. I do know how you feel, even

being a female. This disease makes me so angry sometimes over what I've lost

- a part of my life, a part of ME. And it makes me feel so vulnerable. I

need help like a baby sometimes just to walk.

I know that all of us can relate to what you are feeling right now.

I have found that just knowing someone else out there understands and that

I'm not alone can make a huge difference on the bad days.

Hang in there - things will look brighter tomorrow - or the next day - or the

next - but all of us are here and understand.

Take care,

[Guest guest]

I've said it before but I'll say it again...The doc wanted me on

Enbrel because he said Enbrel isn't suppose to " go after " the organs

like methotrexate or gold shots. No one knows the long term effects

of something so new while mtx has been around for decades. newjersey

I only have PA and am on Enbrel with great results (knock on wood). I

hope there are enough doing the trials so it gets approved by the FDA

soon for those that have been denied the opprtunity to try Enbrel

because the insurance won't pay up until it is FDA approved. I'm

grateful my insurance approved it after writing to them that the mtx

irritated my liver.

Pat B

> I'm about to do the clinical trial for Enbrel....But before I do I

have to

> sign all these papers that say that there is a small chance that

Enbrel can

> cause tumors? is that true or did I read it wrong? And it has those

same

> scary side-effects like MTX....like there have been reports of

death and

> stuff.... Reading that crap really just turns me off....And can I

drink

> alcohol if i'm on ENbrel? because I know its a " no no " with

MTX.... My

> right arm is killing me today and i'm all depressed over

this....that and

> because I cant even lift weights anymore.......its just very

depressing that

> i'm 25 and I used to be a big guy , strong and all...played

basketball all

> the time , football....And now I have a hard time putting my shirt

on in the

> morning... I just had a thought that popped into my head today ,

About just

> feeling this pain and almost to the point at which I feel like

anybody can

> beat me up now because it hurts so much to move my arm....Its not

like

> anybody wants to or anything , but just this insecure feeling is

really

> startin to get its grip on me and causing all kinds of

emotions..... I just

> feel like a punk now.... I have to tell everybody " no, i cant do

that

> because my arms are hurting " ... And I HATE it so much because my

family does

> not understand this pain and has no clue what it feels like...... I

just

> feel like breaking something right now....... u guys ever feel like

that?

> Maybe if I drink a bottle of wine i'll feel better......And if your

going to

> reply, please dont mention anything about seeing a therapist....

I've had it

> with them...

[Guest guest]

Hi Newjersey,

The honest answer is I don't think anyone knows for sure yet. It's

just too new on the drug market. As time goes by more will be found

out about the long term effects of this drug assuming there are any

and you can bet like any medication there will be some effects. I

haven't heard about any alcohol related problems, but many Rheumys

will recommend taking MTX along with the Enbrel.

I know how you feel Newjersey because I felt like crap too, although

I am twice your age which makes things worse, you being so young. Let

me just encourage you about how well Enbrel has been working for me.

Don't give up, there is hope ahead for you! Here is what I said

earlier this month about Enbrel.

" As I mentioned, the Enbrel has made a big difference for me so far.

I joined this Enbrel taking group at the beginning of May. From what

I understand, the side effects are very low compared to other

medications. That's what everyone is saying today. I don't think

anyone can say for sure if there are any serious long-term effects

from taking Enbrel. It's just too new to know without a doubt. But my

quality of life before starting the Enbrel was not satisfactory for

me and I'm 50 not 25! Let's face it, life has all kind of risks

associated with being alive. You take your best shot.

Taking the Enbrel injection is mechanically very easy. I think it's

saying to yourself " how do I feel " " do I want to live my life this

way " " should I try something else to made me feel better " .

Enbrel is one of the new man-made designer medications on the US drug

market. I think its been out for about 16 months now. It's very

expensive about $1,000.00 per month! You need to have insurance, be

rich, or in a drug study to afford to take it. I'm fortunate so far -

my company's drug benefit pays for the medication.

Enbrel was first prescribed for RA and this is the drug's primary

market. Rheumys found out it also works on PA patients (my Rheumy has

about 20 PA people on Enbrel) and I believe Enbrel is currently under

US FDA trials for official approval for prescribing Enbrel for PA

usage.

Enbrel is given by injection (you self inject) two times per week.

You must always keep the Enbrel refrigerated until you are ready to

give yourself an injection. Your Rheumy gives you a prescription for

the drug.

I can say that for me Embrel works very well. I've had PA for almost

six years and finally started taking MTX in January 1999 after

feeling pretty bad for over six months. I've always been on an anti-

inflammatory of some kind since I had PA. Currently, I'm taking

Celebrex in addition to the Enbrel and MTX. I have never taken any

pain medication and until I started on the Enbrel, I also had to deal

with varying levels of pain and I believe, pain induced exhaustion.

The Enbrel has taken away almost all of my pain and fatigue.

I assume the Enbrel has done this since nothing else in my routine

has changed since I started taking the drug this May.

What are the side effects? For me, although it's hard to believe, I

haven't noticed any that I can point to so far. There have been many

reports of injection site reactions. Enbrel acts as an

immunosuppressive to a person's immune system. Various infections

(colds and sinusitis) have been reported from taking the drug. There

have also been a few reports of deaths attributed to the Enbrel to

patients who had medically serious infections. In the literature

provided by Wyeth-Ayerst Laboratories and Immunex under the heading

WARNINGS:

" In post -marketing reports, serious infections and sepsis, including

fatalities, have been reported with the use of Enbrel. Many of these

serious events have occurred in patients with underlying diseases

that in addition to their Rheumatoid Arthritis could predispose them

to infections…Administration of Enbrel should be discontinued if

a patient develops a serious infection or sepsis " . "

Fight the good fight newjersey!

bruce

>I'm about to do the clinical trial for Enbrel....But before I do I

>have to sign all these papers that say that there is a small chance

>that Enbrel can cause tumors? is that true or did I read it wrong?

>And it has those same scary side-effects like MTX....like there have

>been reports of death and stuff.... Reading that crap really just

>turns me off....And can I drink alcohol if i'm on ENbrel? because I

>know its a " no no " with MTX....

[Guest guest]

For what it's worth, I'm in my second week of enbrel, with

outstanding results. Prior to starting enbrel, along with the joint

pain and swelling in my thumbs and toes, I'd had intense pain in my

ribs and back that prevented me from comfortably lying down, and

which kept me from getting more than 3 or 4 hours of sleep a night.

The very day I got my first enbrel shot, my back and rib pain

disappeared. Completely. And my thumbs are not nearly as painful as

they used to be. Bottom line is, it works for me.

So, is enbrel potentially dangerous? I suppose so. It's possible,

maybe even probable, with a drug that really seems to be " too good to

be true. " As far as actual documented, known dangers go, though (and

I'm sure the group will correct me if I'm wrong), there ARE the

frightening deaths associated with ebrel, but that was limited to

people who were predisposed to chronic infections (such as diabetic

leg ulcers). The other things, like malignancies, etc., are possible

based on what the drug does, but have not shown up as statistically

more likely in the users of enbrel in the clinical studies vs. those

who received a placebo. Most importantly, to me at least, I talked

to my doctor about it, and he told me that he and some of his

rheumatologist buddies had discussed enbrel, and they all agreed that

if they had rheumatoid or psoriatic arthritis, enbrel is the drug

that they would choose for themselves.

I guess what I'm saying is that to me, at least so far, its worth the

risks, as well as the inconvenience of having to inject myself twice

a week. Like you, I'm a relatively young, athletic guy who suddenly

found himself robbed of the physical abilities that he counted on for

so long. Enbrel has given me some of that back. I can lift weights

again. I can ride my bike. I'm not afraid of being unable to get

out of the way of a car while crossing the street.

Look, I still don't know if enbrel will continue to be as effective

for me in the months and years to come, and I'll definitely be

singing a different tune if I get cancer or some horrible infection,

but right now I can't worry about that. I got a taste of what it's

like to be in pain 24 hours a day, and I didn't like it. Life is too

short.

Anyway, if you do decide to do the study, good luck. I really hope

it works for you.

[Guest guest]

To NJ23 I know exactly how you feel. I am in the process of trying to get to

work. It is raining and I ache all over, especially my feet. This morning in

the shower I realized that I have to get a seat for the shower because I can

not stand on my feet for the five minutes i have to leave the T GEL on my

scalp for my P and I can not lift my arms to really wash my hair and now I

have to figure out something to ware that will go with the only shoes that

will fit and it can not be anything dark in color because I will start

shedding today as I get stressed at work. Sounds like Dominoes. I signed on

to read the posting to help me get thru the day. I tell you this because the

only thing that makes me feel better when I am this depressed is all of these

wonderful people in this group. You guys are the only ones who understand. I

wish you the best NJ@#, Michele in NJ

Moderator note: , what kind of pain meds are you taking so you can stay

working? There are many kinds that will get you thru the day. Some Derms say to

go ahead and put the T Gel on up to an hour before bathing for the full benefit

on the scalp. You work up to how long you let it stay on. This way you can sit

around the house and not remain standing in the shower. I used to love bathing

and reading in the tub until the pain of trying to get out of the tub had me in

there less and less. The DMARDs will help in your mobility. Which are you on

right now? Take care, Pat B

[Guest guest]

Hi Pat B, I am taking 200mg of Meclofenamate and 1000mg of azulfidine and 2

tylenol Arthritis daily. I started these drugs in the end of June. I don't

think they are really doing any good. My feet hurt so much when I get home I

go straight to the bed and change my clothes sitting down. It takes about

two hours in the morning to get me moving. Unfortunately I have to work and

my six months of disability are up. I have read the horror stories from the

group members about long term disability so I am going to keep trying to get

to work until I fall on my face or they decide to let me go because I cannot

perform my job. I really do not know what else to do. Have you heard about

the drugs I am taking? I don't hear them mentioned in the postings. Have a

great day! Michele in NJ

[Guest guest]

Jersey,

I haven't tried Enbrel but might give it a try if my HMO goes for

it. I've taken MTX on and off over the last three years with good

results. However, is MTX what I want to take for THE REST OF MY LIFE?

I really don't know.

Also, like yourself, I'm a pretty athletic guy. I've played golf my

whole life and can still maintain a my level of play. One thing I'd

recommend is that in the winter, get to the pool and swim some laps.

I live in Chicago (same weather as NJ) and swim 2-3 times per week

and then hit the whirlpool. Works great! Also, go out and get some

magnets to strap on. Buy the ones that you have to put on with

athletic tape not anything that has a barrier in between. You want

the magnet right on the joint or area directly!

Finally, if you want to beat something, get a stress ball and bust

it!! I've done that to a couple of those damn things!

Remember, this is something that you have to deal with the rest of

your life. Think of it as a daily thing (like shaving) and you'll

not go nuts. Make it a part of your routine and save your sanity!

Good Luck!

Mike

PS: Its Ok to have a couple of beers now and then! Just don't drink

and drive.