Re: Enbrel no longer working

[Guest guest]

,

Yes...of course you have to try anything/everything until you can get some

relief.

It doesn't sound like your Dr. is overly concerned. Is there maybe a Dr. who

specializes in PA in your area? I think that one of the things we all know

is that finding a Dr. who has empathy for our pain is most important.

Hopefully more Dr's. are becoming informed due to patients and web sites such

as this one. I have passed this web address on to my Rhumy and hope that

other's are doing the same.

(in VA)

[Guest guest]

This is my 3rd rheumy. I have a feeling I am going to have to drive an hour

to get to Houston medical center. They probably have better dr.'s there. I

have mentioned things from the internet and this support group. I get that

glazed roll of the eyes look. I swear my dr. thinks she is God or

something. She is the expert and as far as she is concerned this group

doesn't know as much as her and I suppose we are all wrong in our

experiences. And, all other dr.'s are wrong too and can't possibly " know my

condition better than her. " What's worse is that she thinks she knows how I

am feeling better than me! I think I know my body better than anyone. I am

the one who is experiencing the pain, not her. I am the one who has to live

with it everyday. I feel like most of the time she doesn't even listen. I

suffered with carpal tunnel pain all the way up to my shoulder for 6 months

before she finally did the EMG. It turned out it was so bad that if I

didn't have surgery immediately I would have lost function of my hand

entirely. It was so bad because she didn't listen to me and didn't believe

how much pain I was in. If she would have believed me I probably wouldn't

had needed the surgery. The surgeon said I had an advanced case and I must

have had it for a long time.

Now I am worried about this back thing. She never got the results of my

x-rays over a year ago. Maybe I have PA in my spine too. Does that always

show up on the x-rays or can it be like the smaller joints with no

deterioration? I am lucky to not have any permanent damage in my hands.

Just red and swollen digits. PA can affect the soft tissues too, can't it?

Also, she wants to see me again in 6 months. I think that is rather strange

since I am flaring so badly, I have new joints affected and she even

admitted the enbrel wasn't working. I thought usually you go every 3

months. I have had labs done only once this past year. And I was never

tested for TB prior to going on Enbrel. I am just wondering if she is

missing something. I hate changing docs and starting this process all over

again but I guess I really don't have a choice.

She also said that I need to go back to work so I know she won't support me

on getting disability. She admits I have a sleep disorder. I fall asleep

at work, while driving, ect. I think that is dangerous. I have such a hard

time getting up in the morning. I am always sick and work makes me hurt

more. Disability would be great but if I don't have a dr. that supports me

then I don't have much of a case. My husband is looking for a job with

insurance so I can at least work part time. I'll probably change rheumy's

then. I just wish she swallow her pride and try to help me.

[Ed. Note: , would you mind sending the name and address of your rheumy

from the " Twilight Zone " to me at PA@... please? I would like to put her

on the " Not Recommended " list in our forum database. By the way, I see my rheumy

every six WEEKS. Telling you to come back in six MONTHS is almost beyond

belief!. Ron]

Re: [ ] Enbrel no longer working

> ,

> Yes...of course you have to try anything/everything until you can get some

> relief.

> It doesn't sound like your Dr. is overly concerned. Is there maybe a Dr.

who

> specializes in PA in your area? I think that one of the things we all

know

> is that finding a Dr. who has empathy for our pain is most important.

> Hopefully more Dr's. are becoming informed due to patients and web sites

such

> as this one. I have passed this web address on to my Rhumy and hope that

> other's are doing the same.

> (in VA)

>

[Guest guest]

I would just like to comment on PA in your spine showing up in an x-

ray. It may not. Joint damage will show. However, not all PA has

joint damage. I recently had a thumb that was very swollen in one

joint. The joint was distorted and my PCP even told me that it felt

like bone enlargement. I went to the rheumy and had an x-ray.

Nothing unusual showed on the x-ray. It turned out it was just very

swollen soft tissue and that there was no bone damage. In fact, I

have not had any bone damage. All my PA symptoms to date involve

pain and swollen soft tissue. The same may be true for your spine.

Good luck

Fred

> This is my 3rd rheumy. I have a feeling I am going to have to

drive an hour

> to get to Houston medical center. They probably have better dr.'s

there. I

> have mentioned things from the internet and this support group. I

get that

> glazed roll of the eyes look. I swear my dr. thinks she is God or

> something. She is the expert and as far as she is concerned this

group

> doesn't know as much as her and I suppose we are all wrong in our

> experiences. And, all other dr.'s are wrong too and can't

possibly " know my

> condition better than her. " What's worse is that she thinks she

knows how I

> am feeling better than me! I think I know my body better than

anyone. I am

> the one who is experiencing the pain, not her. I am the one who

has to live

> with it everyday. I feel like most of the time she doesn't even

listen. I

> suffered with carpal tunnel pain all the way up to my shoulder for

6 months

> before she finally did the EMG. It turned out it was so bad that

if I

> didn't have surgery immediately I would have lost function of my

hand

> entirely. It was so bad because she didn't listen to me and didn't

believe

> how much pain I was in. If she would have believed me I probably

wouldn't

> had needed the surgery. The surgeon said I had an advanced case

and I must

> have had it for a long time.

>

> Now I am worried about this back thing. She never got the results

of my

> x-rays over a year ago. Maybe I have PA in my spine too. Does

that always

> show up on the x-rays or can it be like the smaller joints with no

> deterioration? I am lucky to not have any permanent damage in my

hands.

> Just red and swollen digits. PA can affect the soft tissues too,

can't it?

>

> Also, she wants to see me again in 6 months. I think that is

rather strange

> since I am flaring so badly, I have new joints affected and she even

> admitted the enbrel wasn't working. I thought usually you go every

3

> months. I have had labs done only once this past year. And I was

never

> tested for TB prior to going on Enbrel. I am just wondering if she

is

> missing something. I hate changing docs and starting this process

all over

> again but I guess I really don't have a choice.

>

> She also said that I need to go back to work so I know she won't

support me

> on getting disability. She admits I have a sleep disorder. I fall

asleep

> at work, while driving, ect. I think that is dangerous. I have

such a hard

> time getting up in the morning. I am always sick and work makes me

hurt

> more. Disability would be great but if I don't have a dr. that

supports me

> then I don't have much of a case. My husband is looking for a job

with

> insurance so I can at least work part time. I'll probably change

rheumy's

> then. I just wish she swallow her pride and try to help me.

>

>

>

>

> [Ed. Note: , would you mind sending the name and address of

your rheumy from the " Twilight Zone " to me at PA@s... please? I would

like to put her on the " Not Recommended " list in our forum database.

By the way, I see my rheumy every six WEEKS. Telling you to come back

in six MONTHS is almost beyond belief!. Ron]

>

>

> Re: [ ] Enbrel no longer working

> > ,

> > Yes...of course you have to try anything/everything until you can

get some

> > relief.

> > It doesn't sound like your Dr. is overly concerned. Is there

maybe a Dr.

> who

> > specializes in PA in your area? I think that one of the things

we all

> know

> > is that finding a Dr. who has empathy for our pain is most

important.

> > Hopefully more Dr's. are becoming informed due to patients and

web sites

> such

> > as this one. I have passed this web address on to my Rhumy and

hope that

> > other's are doing the same.

> > (in VA)

> >

[Guest guest]

...Geeeez.....get rid of that DOCTOR??.....if she thinks this site is

not good then she has to be " bad " ....lol! (VA)

[Guest guest]

Oh man, get a new doctor right away. I would go even further

and write a letter explaining your experiences and submit it to

your state's medical review board and/or licensing organization.

Six months is not only a long time to wait to see your doctor for

people who have all our problems, but it is outright dangerous

for people on our types of medications. Like Ron said, six

months is beyond belief. I, like others, have to get my blood

tested every 6 weeks. It was only a couple of months ago, after

seeing my doc every 6 weeks for over 2 years, that she said I

could wait to see her in 3 months, but I still would have to go in to

get my blood tested in 6 weeks.

Report your doctor to all the authorities possible. Seriously. One

who respects you and your experiences and problems.

> This is my 3rd rheumy. I have a feeling I am going to have to

> drive an hour to get to Houston medical center. They probably

> have better dr.'s there. I have mentioned things from the

> internet and this support group. I get that glazed roll of

> the eyes look. I swear my dr. thinks she is God or something.

> She is the expert and as far as she is concerned this group

> doesn't know as much as her and I suppose we are all wrong in

> our experiences. And, all other dr.'s are wrong too and can't

> possibly " know my condition better than her. " What's worse is

> that she thinks she knows how I am feeling better than me! I

> think I know my body better than anyone. I am the one who is

> experiencing the pain, not her. I am the one who has to live

> with it everyday. I feel like most of the time she doesn't

> even listen. I suffered with carpal tunnel pain all the way

> up to my shoulder for 6 months before she finally did the

> EMG. It turned out it was so bad that if I didn't have

> surgery immediately I would have lost function of my hand

> entirely. It was so bad because she didn't listen to me and

> didn't believe how much pain I was in. If she would have

> believed me I probably wouldn't had needed the surgery. The

> surgeon said I had an advanced case and I must have had it

> for a long time.

>

> Now I am worried about this back thing. She never got the

> results of my x-rays over a year ago. Maybe I have PA in my

> spine too. Does that always show up on the x-rays or can it

> be like the smaller joints with no deterioration? I am lucky

> to not have any permanent damage in my hands. Just red and

> swollen digits. PA can affect the soft tissues too, can't it?

>

> Also, she wants to see me again in 6 months. I think that is

> rather strange since I am flaring so badly, I have new joints

> affected and she even admitted the enbrel wasn't working. I

> thought usually you go every 3 months. I have had labs done

> only once this past year. And I was never tested for TB prior

> to going on Enbrel. I am just wondering if she is missing

> something. I hate changing docs and starting this process all

> over again but I guess I really don't have a choice.

>

> She also said that I need to go back to work so I know she

> won't support me on getting disability. She admits I have a

> sleep disorder. I fall asleep at work, while driving, ect. I

> think that is dangerous. I have such a hard time getting up

> in the morning. I am always sick and work makes me hurt more.

> Disability would be great but if I don't have a dr. that

> supports me then I don't have much of a case. My husband is

> looking for a job with insurance so I can at least work part

> time. I'll probably change rheumy's then. I just wish she

> swallow her pride and try to help me.

>

>

>

>

> [Ed. Note: , would you mind sending the name and

address of your rheumy from the " Twilight Zone " to me at

PA@s... please? I would like to put her on the " Not

Recommended " list in our forum database. By the way, I see my

rheumy every six WEEKS. Telling you to come back in six

MONTHS is almost beyond belief!. Ron]

[Guest guest]

,

I think you need to switch docs right away...even when I am not having a

flare, I go every 6-8 weeks to the rheumatologist. I have heard that there

are some people at Baylor that do research on PA...is that near you?

[Guest guest]

Most people don't get TB tests before going on any of the biologics. Through

my own research I demanded it.

Also, please let me know how often other Dr.'s take X-rays. I don't know that

these are being done often enough. They showed nothing last April, and I have

had more targeted joint pain since then, so I fear damage. I have asked for

X-rays, and he says only once a year.

Any info on this?

[Ed. Note: My rheumy required a TB test before starting me on Remicade. Ron]

In a message dated 2/6/03 1:30:58 AM Eastern Standard Time,

leslieiansa@... writes:

> And I was never

> tested for TB prior to going on Enbrel. I am just wondering if she is

> missing something. I hate changing docs and starting this process all over

> again but I guess I really don't have a choice.

>

[Guest guest]

I was tested for TB before I went on Enbrel and actually came back with a

positive test for being exposed to TB. So now I am on more drugs for that.

I am on an INH Therapy and a Vitamin B supplement. They said I would have

to take that for 9 months. My PA is getting worse rather than better on the

MTX and the prednisone is making my blood sugar skyrocket so I am stuck. My

Rheumy told me last week he wants me to start on the Enbrel in 4 weeks and

to continue the INH and the MTX for a while and we'll see how it goes. I

would definitely get tested for TB before I start the Enbrel.

Bob Mowery

[Guest guest]

Lars,

I wonder why my rheumy didn't give me this option? I understand I can't

take NSAID b/c my ulcer. I also understand why she didn't offer to add mtx

since it was uneffective and caused bad side effects. It baffles me though

that with all the meds out there she didn't want me to try something else.

Thanks to this forum I am going to see one of the recommended dr.'s on the

list. I hopefully I will have better luck this time!

take care,

[Guest guest]

I'm changing docs. No more excuses! I thought 6 months would be strange.

I usually go every 2-3 months. I also thought it was strange I wasn't

getting labs but I thought maybe it wasn't required for Enbrel. I also

thought it was weird that I never had anymore x-rays. I was shocked to find

out she never even got the results from the only x-rays she ever took. That

makes me wonder if she even got the results from the few labs she took as

well. I'll write a letter of complaint. I would hate for someone else to

have to suffer through this especially since stress causes flares.

take care,

[ ] Re: Enbrel no longer working

> Oh man, get a new doctor right away. I would go even further

> and write a letter explaining your experiences and submit it to

> your state's medical review board and/or licensing organization.

>

> Six months is not only a long time to wait to see your doctor for

> people who have all our problems, but it is outright dangerous

> for people on our types of medications. Like Ron said, six

> months is beyond belief. I, like others, have to get my blood

> tested every 6 weeks. It was only a couple of months ago, after

> seeing my doc every 6 weeks for over 2 years, that she said I

> could wait to see her in 3 months, but I still would have to go in to

> get my blood tested in 6 weeks.

>

> Report your doctor to all the authorities possible. Seriously. One

> who respects you and your experiences and problems.

>

>

> > This is my 3rd rheumy. I have a feeling I am going to have to

> > drive an hour to get to Houston medical center. They probably

> > have better dr.'s there. I have mentioned things from the

> > internet and this support group. I get that glazed roll of

> > the eyes look. I swear my dr. thinks she is God or something.

> > She is the expert and as far as she is concerned this group

> > doesn't know as much as her and I suppose we are all wrong in

> > our experiences. And, all other dr.'s are wrong too and can't

> > possibly " know my condition better than her. " What's worse is

> > that she thinks she knows how I am feeling better than me! I

> > think I know my body better than anyone. I am the one who is

> > experiencing the pain, not her. I am the one who has to live

> > with it everyday. I feel like most of the time she doesn't

> > even listen. I suffered with carpal tunnel pain all the way

> > up to my shoulder for 6 months before she finally did the

> > EMG. It turned out it was so bad that if I didn't have

> > surgery immediately I would have lost function of my hand

> > entirely. It was so bad because she didn't listen to me and

> > didn't believe how much pain I was in. If she would have

> > believed me I probably wouldn't had needed the surgery. The

> > surgeon said I had an advanced case and I must have had it

> > for a long time.

> >

> > Now I am worried about this back thing. She never got the

> > results of my x-rays over a year ago. Maybe I have PA in my

> > spine too. Does that always show up on the x-rays or can it

> > be like the smaller joints with no deterioration? I am lucky

> > to not have any permanent damage in my hands. Just red and

> > swollen digits. PA can affect the soft tissues too, can't it?

> >

> > Also, she wants to see me again in 6 months. I think that is

> > rather strange since I am flaring so badly, I have new joints

> > affected and she even admitted the enbrel wasn't working. I

> > thought usually you go every 3 months. I have had labs done

> > only once this past year. And I was never tested for TB prior

> > to going on Enbrel. I am just wondering if she is missing

> > something. I hate changing docs and starting this process all

> > over again but I guess I really don't have a choice.

> >

> > She also said that I need to go back to work so I know she

> > won't support me on getting disability. She admits I have a

> > sleep disorder. I fall asleep at work, while driving, ect. I

> > think that is dangerous. I have such a hard time getting up

> > in the morning. I am always sick and work makes me hurt more.

> > Disability would be great but if I don't have a dr. that

> > supports me then I don't have much of a case. My husband is

> > looking for a job with insurance so I can at least work part

> > time. I'll probably change rheumy's then. I just wish she

> > swallow her pride and try to help me.

> >

> >

> >

> >

> > [Ed. Note: , would you mind sending the name and

> address of your rheumy from the " Twilight Zone " to me at

> PA@s... please? I would like to put her on the " Not

> Recommended " list in our forum database. By the way, I see my

> rheumy every six WEEKS. Telling you to come back in six

> MONTHS is almost beyond belief!. Ron]

>

>

>

>

> Please visit our Psoriatic Arthritis Group's informational web page at:

> http://www.wpunj.edu/pa/ -- created and edited by list member

aka(raharris@...).

>

> In August 2001 list member Jack aka(Cornishpro@...) began to

conduct extensive research which he publishes as the Psoriatic Arthritic

Research Newsletter monthly in our emails and digest format. Many thanks to

Jack. Back issues of the newsletter are stored on our PA webpage.

>

> Also remember that the list archives comprise a tremendous amount of

information (Over two years of messages and answers).Feel free to browse

them at your convenience.

>

> Let's hear from some of you lurkers out there! If you have a comment or

question chances are there is a person who has been around a while who can

help you out with an educated guess for an answer. If not we can at least

steer you in the right direction with a good website to go to for the

answers.

>

> Blessings and Peace,

>

> Atwood-Stack, Founder

> Alan , Web & List Editor

> Jack , Newsletter Editor

> Pat Bias, List Editor

> Ron Dotson, List Editor

> and many others who help moderate (thank you!)

>

>

>

[Guest guest]

uhg they are a nuisance... I have to ahve one yearly do to me working in a

clinic.

Re: [ ] Enbrel no longer working

> Most people don't get TB tests before going on any of the biologics.

Through

> my own research I demanded it.

>

> Also, please let me know how often other Dr.'s take X-rays. I don't know

that

> these are being done often enough. They showed nothing last April, and I

have

> had more targeted joint pain since then, so I fear damage. I have asked

for

> X-rays, and he says only once a year.

>

> Any info on this?

>

>

>

>

> [Ed. Note: My rheumy required a TB test before starting me on Remicade.

Ron]

>

>

> In a message dated 2/6/03 1:30:58 AM Eastern Standard Time,

> leslieiansa@... writes:

>

> > And I was never

> > tested for TB prior to going on Enbrel. I am just wondering if she is

> > missing something. I hate changing docs and starting this process all

over

> > again but I guess I really don't have a choice.

> >

>

>

>

>

[Guest guest]

I had no dr.'s tell me to get a TB test before Enbrel/Remicade. The only

way I found out about it was on this forum.

[Guest guest]

,

The majority do not, according to my Rheum. It is NOT standard protocol, unless

there are other circumstances contributing to concern. (age, exposure, constant

infections, etc.)

In a message dated 2/10/2003 5:01:49 PM Eastern Standard Time,

leslieiansa@... writes:

> I had no dr.'s tell me to get a TB test before

> Enbrel/Remicade. The only

> way I found out about it was on this forum.

>

>

[Guest guest]

Baylor is near me (well about an hour). Anybody know where/how to find out

the best dr.'s to see for PA?

thanks,

Re: [ ] Enbrel no longer working

> ,

>

> I think you need to switch docs right away...even when I am not having a

> flare, I go every 6-8 weeks to the rheumatologist. I have heard that there

> are some people at Baylor that do research on PA...is that near you?

>

>

>

>

>

[Guest guest]

My husband got a video to watch from his Rheum. In the video we watched it

started off by saying that Enbrel recommends a TB skin test be performed.

Re: [ ] Enbrel no longer working

,

The majority do not, according to my Rheum. It is NOT standard protocol,

unless there are other circumstances contributing to concern. (age,

exposure, constant infections, etc.)

In a message dated 2/10/2003 5:01:49 PM Eastern Standard Time,

leslieiansa@... writes:

> I had no dr.'s tell me to get a TB test before

> Enbrel/Remicade. The only

> way I found out about it was on this forum.

>

>

Please visit our Psoriatic Arthritis Group's informational web page at:

http://www.wpunj.edu/pa/ -- created and edited by list member

aka(raharris@...).

In August 2001 list member Jack aka(Cornishpro@...) began to

conduct extensive research which he publishes as the Psoriatic Arthritic

Research Newsletter monthly in our emails and digest format. Many thanks to

Jack. Back issues of the newsletter are stored on our PA webpage.

Also remember that the list archives comprise a tremendous amount of

information (Over two years of messages and answers).Feel free to browse

them at your convenience.

Let's hear from some of you lurkers out there! If you have a comment or

question chances are there is a person who has been around a while who can

help you out with an educated guess for an answer. If not we can at least

steer you in the right direction with a good website to go to for the

answers.

Blessings and Peace,

Atwood-Stack, Founder

Alan , Web & List Editor

Jack , Newsletter Editor

Pat Bias, List Editor

Ron Dotson, List Editor

and many others who help moderate (thank you!)

[Guest guest]

, it the same for me. I will be starting Enbrel training this Friday, and

it was an absolute must that I get a TB test before hand. I had to call my

rheumy once I got the negative results back, so they could start the ball in

motion to get me my Enbrel.

I hope I get good results Enbrel. First time I've ever been excited to get

more shots. I already inject MTX.

Carol in Vancouver, WA

n a message dated 2/11/03 10:11:55 PM Pacific Standard Time,

rmowery@... writes:

> My husband got a video to watch from his Rheum. In the video we watched it

> started off by saying that Enbrel recommends a TB skin test be performed.

>

>

[Guest guest]

, I can't remember where I read about Baylor, but in my research over

the last few months, I know I saw an article by someone at Baylor who was a

PA specialist...Check out their website...I know on the Hopkins medical web

site, they list the rheumatology dept and what they all specialize in (no one

at Hopkins specializes in PA). Maybe that will help:-)

[Guest guest]

WOW! I am glad they have started this. (It's something I thought should

happen all along... I also feel a Hepatitis test is VERY important) I

received my video last March, and my video said nothing about a TB or

Hepatitis test recommendation, but through research of my own I certainly

felt it necessary. My Dr. said he certainly saw no harm but only good coming

out of doing it. Anyway, I am just glad they are now recommending this! I

will have to ask my Rheum for a more recent video.

In a message dated 2/14/2003 12:05:39 AM Eastern Standard Time,

cacombe@... writes:

> , it the same for me. I will be starting Enbrel training this Friday,

> and

> it was an absolute must that I get a TB test before hand. I had to call my

> rheumy once I got the negative results back, so they could start the ball

> in

> motion to get me my Enbrel.

>

> I hope I get good results Enbrel. First time I've ever been excited to get

> more shots. I already inject MTX.

>

> Carol in Vancouver, WA

>

> n a message dated 2/11/03 10:11:55 PM Pacific Standard Time,

> rmowery@... writes:

>

> > My husband got a video to watch from his Rheum. In the video we watched

> it

> > started off by saying that Enbrel recommends a TB skin test be performed.

> >

> >

>

>

>

[Guest guest]

I am so sorry Pat

I can only imagine you are so upset.

I have not found a drug that works for me. I am having a hard time walking for

longer that a couple hours without needing help

I am so upset, I have a festival I want to go with my kids and am worried about

it

Also I am overweight and it is soooo hard to lose weight

making me sad lately

Blessings

Kathy

mi

[Guest guest]

yes I have I stopped enbrel about six months ago. I had to do a wash of it and

I'm hopeing to goto the doc in the beginning of august to start a new treatment.

I was on enbrel for 3 years when it stopped working for me

[ ] Enbrel no longer working

Has anyone experienced Enbrel no longer being effective? I have been using

Enbrel for about 2 years. Gradually, I have become more and more exhausted, have

had more joint pain than in the past and ache all over. My rheumy has told me

that the Enbrel may no longer be effective for me and I will need to change to

another drug. Has anyone out there experienced this?

Thanks!

Pat

[Guest guest]

,

Thanks so much for your response. It really helped me!

Pat

>

> yes I have I stopped enbrel about six months ago. I had to do a wash of it

and I'm hopeing to goto the doc in the beginning of august to start a new

treatment. I was on enbrel for 3 years when it stopped working for me

>

>

>

> [ ] Enbrel no longer working

>

>

>

>

>

> Has anyone experienced Enbrel no longer being effective? I have been using

Enbrel for about 2 years. Gradually, I have become more and more exhausted, have

had more joint pain than in the past and ache all over. My rheumy has told me

that the Enbrel may no longer be effective for me and I will need to change to

another drug. Has anyone out there experienced this?

> Thanks!

> Pat

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[Guest guest]

I'm glad that it has. I thought enbrel was a god sent to me but in august of

last year I realized it was not working. I would have more joint pain and more

swelling then ever. I now since being of the enbrel have gotten worse though.

I think I have neuropathy now at this point and wish there was something I could

do about it.

[ ] Enbrel no longer working

>

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> Has anyone experienced Enbrel no longer being effective? I have been using

Enbrel for about 2 years. Gradually, I have become more and more exhausted, have

had more joint pain than in the past and ache all over. My rheumy has told me

that the Enbrel may no longer be effective for me and I will need to change to

another drug. Has anyone out there experienced this?

> Thanks!

> Pat

>

>

>

>

>

>

[Guest guest]

I went off Enbrel after about 18 months to have surgery; when I went back to it,

it no longer worked. I then did Humira for about four months with no relief.

My rheumatologist moved me to Orencia (monthly infusions) and it has done well

for me so far (I've been on it about 18 months). I just had another surgery and

had to skip an infusion, so fingers are crossed for relief after the next

infusion. If this doesn't work, Rituxan is probably next in line for me.

Kate P-B

Sent from my Verizon Wireless BlackBerry

[Guest guest]

Me too!  It got to where all it did was keep my immunity low so that I kept

getting infections.  I used it a little over 3 years.  I am now using antibiotic

protocol, & doing reletively well with that. 

 

Judy

yes I have I stopped enbrel about six months ago. I had to do a wash of it and

I'm hopeing to goto the doc in the beginning of august to start a new treatment.

I was on enbrel for 3 years when it stopped working for me

[ ] Enbrel no longer working

Has anyone experienced Enbrel no longer being effective? I have been using

Enbrel for about 2 years. Gradually, I have become more and more exhausted, have

had more joint pain than in the past and ache all over. My rheumy has told me

that the Enbrel may no longer be effective for me and I will need to change to

another drug. Has anyone out there experienced this?

Thanks!

Pat

[Guest guest]

Kathy,

Thanks for writing. Hang in there, I am sure that you will find a solution.

Sometimes I think it just takes trying over and over again.

Take care,

Pat

>

> I am so sorry Pat

> I can only imagine you are so upset.

> I have not found a drug that works for me. I am having a hard time walking for

longer that a couple hours without needing help

> I am so upset, I have a festival I want to go with my kids and am worried

about it

> Also I am overweight and it is soooo hard to lose weight

> making me sad lately

> Blessings

> Kathy

> mi

>