Re: Enbrel Want too... talk side effects!!!!!

[Guest guest]

Dear everyone: I have been in the group quite a long time but don 't get to

post often. I am concerned also about the Enbrel, I have been on the shots

for almost four years, my Ra is severe and I take three shots per week, I am now

having a bout with lung infection so didn't take my shot today and called the

Dr. but didn't hear back from them. I went to my regular Doc yesterday and

he told me after x-rays and blood work that I have a severe lung infection

doesn't know if it is bronchitis or something else, I don't feel terrible but my

temp. is low grade, because of the prednisone that I am. I am coughing

especially when I lay down and my asthma is bad again so am on three heavy

antibiotics, one for my gastropareses and the other two for the lung problem, I

am

really frightened. Anyone knowing anymore than what I know please write to me.

]

Love Shirley

Edmis3@...

[Guest guest]

Hi Chessygirl, Welcome to the group, and I hope that you enjoy.

There are so many wonderful big hearts here. I am sorry to hear

about your terrible experience with Enbrel, that is scary.

You are right most of these drugs do have a side effects, and it's

terrible what some can cause. May I ask what type of meds are you

now? I am so sorry about what has happened, thanks so much for

sharing your story, hugs Tawny

--- In , " chessygirl1 " <stanton952@a...>

wrote:

> Hi there,

> This is my first post here, I hope I can help others from the heart

> break I had gone thur. I am not here to scare any one just toooo..

> let u know what happened to me on Enbrel for RA. I also have

> Fibromyalgia for 8.5 years RA dx 1997 and other diease i will post

> about at another time.

>

> I was put on a waiting list for this drug in 2000. I came to the

top

> of the list 11/2002, I started the Enbrel right away I found relief

> from RA in 5 to 6 weeks or sooo... I believed I was back to Normal

> (right) I was so happy. But the evilness of this FDA approved drug

> came to a head. In my right eye I started having a hard time with

my

> sight and things going blurry , I thought that they were just tried.

> then on 2/26/2003 I could not see all, I could see was the out line

> of

> thing for Example I could see your face but not you eyes ot mouth

> just the figure.

>

> I decieded I needed to go see an Eye doc and he told me that I had

> Optic Nerutris(one of the signs of Ms abd bought on by Enbrel).

> From there I went to see rheummy and told her what was going on

> She then admitted me right away and started mega doses of steroids.

> I now am legaly blind in that eye from the Enbrel

>

> I was will to do any thing to get out of pain, Enbrel is a hermone

> from a chinnies hamster overies i was put this into my body i must

> have been crazy To put forign thing into my body to me i will live

> life in pain and have my sight my left eye tooo.. me I do nt

believe

> this drug id worth lossing our sight over

>

> I do kow that this side effect was a freak one but if it happened

to

> me COULD IT HAPPEN TO YOU.

>

> I dont believe this is worth it to me to risk your sight or to get

MS

> or death.

>

> Please becarfull on this drug and learn all you can about this drug.

> My lawyer told me that remicaid is 10times worst

> these new RA drugs BIO'S should have not been aaproved by the FDA.

>

> Good luck To....All

> Take Care Chessygirl

[Guest guest]

Dear chesssygirl:

I have been thinking bout asking my doc for enbrel as well but now

after reding your post I am just not so sure anymore...Your experience

is something that no one should have to go thru!!

Inmy humble opinion, I believe who take those biomodification types of

drugs are modern medicine's " guinea pigs " ...

I guess we all have to weigh our options...I am saddened to hear that

yours definitely took a turn for the worse..

God bless...

--- In , " chessygirl1 " <stanton952@a...>

wrote:

> Hi there,

> This is my first post here, I hope I can help others from the heart

> break I had gone thur. I am not here to scare any one just toooo..

> let u know what happened to me on Enbrel for RA. I also have

> Fibromyalgia for 8.5 years RA dx 1997 and other diease i will post

> about at another time.

>

> I was put on a waiting list for this drug in 2000. I came to the

top

> of the list 11/2002, I started the Enbrel right away I found relief

> from RA in 5 to 6 weeks or sooo... I believed I was back to Normal

> (right) I was so happy. But the evilness of this FDA approved drug

> came to a head. In my right eye I started having a hard time with

my

> sight and things going blurry , I thought that they were just tried.

> then on 2/26/2003 I could not see all, I could see was the out line

> of

> thing for Example I could see your face but not you eyes ot mouth

> just the figure.

>

> I decieded I needed to go see an Eye doc and he told me that I had

> Optic Nerutris(one of the signs of Ms abd bought on by Enbrel).

> From there I went to see rheummy and told her what was going on

> She then admitted me right away and started mega doses of steroids.

> I now am legaly blind in that eye from the Enbrel

>

> I was will to do any thing to get out of pain, Enbrel is a hermone

> from a chinnies hamster overies i was put this into my body i must

> have been crazy To put forign thing into my body to me i will live

> life in pain and have my sight my left eye tooo.. me I do nt believe

> this drug id worth lossing our sight over

>

> I do kow that this side effect was a freak one but if it happened to

> me COULD IT HAPPEN TO YOU.

>

> I dont believe this is worth it to me to risk your sight or to get

MS

> or death.

>

> Please becarfull on this drug and learn all you can about this drug.

> My lawyer told me that remicaid is 10times worst

> these new RA drugs BIO'S should have not been aaproved by the FDA.

>

> Good luck To....All

> Take Care Chessygirl

[Guest guest]

Shirley,

It¹s good that you stopped the Enbrel. Did you have a cold that started the

lung problems?

There have been serious infections reported by Enbrel patients, but most of

them are also on other immunosuppressant drugs such as mtx or prednisone.

Those patients have higher risk for infection. All the biologicals increase

the risk for infection. That is why it is so important to stop taking

Enbrel if an infection is suspected. Shame on your doctor for not getting

back to you. It¹s a good thing you knew not to take the Enbrel.

I hope you get over this infection quickly and can resume the Enbrel. I¹ve

had to stop Enbrel several times in the 6 years I¹ve been on it, and that is

when I found out it worked better than I thought. Coughing when you lay

down sounds like bronchitis. Did the doctor diagnose bronchitis?

I hope you feel better soon.

a

> Dear everyone: I have been in the group quite a long time but don 't get to

> post often. I am concerned also about the Enbrel, I have been on the shots

> for almost four years, my Ra is severe and I take three shots per week, I am

> now

> having a bout with lung infection so didn't take my shot today and called the

> Dr. but didn't hear back from them. I went to my regular Doc yesterday and

> he told me after x-rays and blood work that I have a severe lung infection

> doesn't know if it is bronchitis or something else, I don't feel terrible but

> my

> temp. is low grade, because of the prednisone that I am. I am coughing

> especially when I lay down and my asthma is bad again so am on three heavy

> antibiotics, one for my gastropareses and the other two for the lung problem,

> I am

> really frightened. Anyone knowing anymore than what I know please write to

> me.

> ]

> Love Shirley

> Edmis3@...

>

>

>

[Guest guest]

I¹m really sorry that you have suffered such serious side effects of Enbrel.

I am on Enbrel and have been on it for 6 years. I¹ve read many of the

warnings and they are very scary. Many time I have considered stopping

Enbrel. But then I¹d be faced with being in severe pain as I was before

starting Enbrel. In my case it is not only the pain, but severe erosion of

my joints. I¹ve already lost my knees and ankles. Other joints are

fighting for their lives. I¹ve weighed the pros and cons and since these

side effects are very rare, I will reluctantly continue taking it. Every RA

med has potential serious side effects, but in most cases, these serious

side effects are rare and many of the side effects disappear after

discontinuing the med. The MS symptoms that are a side effect of Enbrel

usually disappear after discontinuing the Enbrel. We all have to educate

ourselves as to the side effects and make the decision if it is worth it.

RA can be very serious and can affect the heart, lungs as well as the joints

so not treating it can be dangerous to. I hope in the future safer and more

effective drugs will become available to us.

a

> Hi there,

> This is my first post here, I hope I can help others from the heart

> break I had gone thur. I am not here to scare any one just toooo..

> let u know what happened to me on Enbrel for RA. I also have

> Fibromyalgia for 8.5 years RA dx 1997 and other diease i will post

> about at another time.

>

> I was put on a waiting list for this drug in 2000. I came to the top

> of the list 11/2002, I started the Enbrel right away I found relief

> from RA in 5 to 6 weeks or sooo... I believed I was back to Normal

> (right) I was so happy. But the evilness of this FDA approved drug

> came to a head. In my right eye I started having a hard time with my

> sight and things going blurry , I thought that they were just tried.

> then on 2/26/2003 I could not see all, I could see was the out line

> of

> thing for Example I could see your face but not you eyes ot mouth

> just the figure.

>

> I decieded I needed to go see an Eye doc and he told me that I had

> Optic Nerutris(one of the signs of Ms abd bought on by Enbrel).

> From there I went to see rheummy and told her what was going on

> She then admitted me right away and started mega doses of steroids.

> I now am legaly blind in that eye from the Enbrel

>

> I was will to do any thing to get out of pain, Enbrel is a hermone

> from a chinnies hamster overies i was put this into my body i must

> have been crazy To put forign thing into my body to me i will live

> life in pain and have my sight my left eye tooo.. me I do nt believe

> this drug id worth lossing our sight over

>

> I do kow that this side effect was a freak one but if it happened to

> me COULD IT HAPPEN TO YOU.

>

> I dont believe this is worth it to me to risk your sight or to get MS

> or death.

>

> Please becarfull on this drug and learn all you can about this drug.

> My lawyer told me that remicaid is 10times worst

> these new RA drugs BIO'S should have not been aaproved by the FDA.

>

> Good luck To....All

> Take Care Chessygirl

>

>

>

>

[Guest guest]

Hi Shirley, I haven't been on Enbrel, but on the weekly humira

injections. There are so many terrible side effects, it's hard to

deal with I know. I will keep you in my prayers, take care Tawny

> Dear everyone: I have been in the group quite a long time but

don 't get to

> post often. I am concerned also about the Enbrel, I have been on

the shots

> for almost four years, my Ra is severe and I take three shots per

week, I am now

> having a bout with lung infection so didn't take my shot today and

called the

> Dr. but didn't hear back from them. I went to my regular Doc

yesterday and

> he told me after x-rays and blood work that I have a severe lung

infection

> doesn't know if it is bronchitis or something else, I don't feel

terrible but my

> temp. is low grade, because of the prednisone that I am. I am

coughing

> especially when I lay down and my asthma is bad again so am on

three heavy

> antibiotics, one for my gastropareses and the other two for the

lung problem, I am

> really frightened. Anyone knowing anymore than what I know please

write to me.

> ]

> Love Shirley

> Edmis3@a...

>

>

>

[Guest guest]

Chessygirl,

I'm quite sorry to hear that you've had such a devastating side effect

as a result of your using Enbrel. Optic neuritis is thought to be a very

uncommon development with Enbrel treatment, but I'm sure that's no

consolation to you.

Have you and/or your physicians reported this to the FDA's MedWatch?

http://www.fda.gov/medwatch/

It's true that the use of biologics has associated serious risks and the

side effect profile is still being developed, but we do have many

members who have been on them for years without experiencing severe

adverse effects.

As with most drugs and biologics, the problem is that we can't yet

predict who is going to have a very serious adverse reaction; however,

untreated and inadequately treated RA has known and quite substantial

risks, too.

The biologics have shown significant efficacy in calming inflammation

and slowing or stopping RA disease progression and have provided

thousands of people with a better quality of life. Biologics have

offered those for whom traditional DMARDs weren't working or stopped

working a valuable alternative.

Your message is an important one. Each individual must be aware of the

possibilities and decide which risks you are willing to take.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Enbrel Want too... talk side effects!!!!!

> Hi there,

> This is my first post here, I hope I can help others from the heart

> break I had gone thur. I am not here to scare any one just toooo..

> let u know what happened to me on Enbrel for RA. I also have

> Fibromyalgia for 8.5 years RA dx 1997 and other diease i will post

> about at another time.

>

> I was put on a waiting list for this drug in 2000. I came to the top

> of the list 11/2002, I started the Enbrel right away I found relief

> from RA in 5 to 6 weeks or sooo... I believed I was back to Normal

> (right) I was so happy. But the evilness of this FDA approved drug

> came to a head. In my right eye I started having a hard time with my

> sight and things going blurry , I thought that they were just tried.

> then on 2/26/2003 I could not see all, I could see was the out line

> of

> thing for Example I could see your face but not you eyes ot mouth

> just the figure.

>

> I decieded I needed to go see an Eye doc and he told me that I had

> Optic Nerutris(one of the signs of Ms abd bought on by Enbrel).

> From there I went to see rheummy and told her what was going on

> She then admitted me right away and started mega doses of steroids.

> I now am legaly blind in that eye from the Enbrel

>

> I was will to do any thing to get out of pain, Enbrel is a hermone

> from a chinnies hamster overies i was put this into my body i must

> have been crazy To put forign thing into my body to me i will live

> life in pain and have my sight my left eye tooo.. me I do nt believe

> this drug id worth lossing our sight over

>

> I do kow that this side effect was a freak one but if it happened to

> me COULD IT HAPPEN TO YOU.

>

> I dont believe this is worth it to me to risk your sight or to get MS

> or death.

>

> Please becarfull on this drug and learn all you can about this drug.

> My lawyer told me that remicaid is 10times worst

> these new RA drugs BIO'S should have not been aaproved by the FDA.

>

> Good luck To....All

> Take Care Chessygirl