Re: Enbrel Not Working Anymore?

[Guest guest]

Hello,

I'm so sorry you are feeling such frustration along with your pain. You

just described

what we all go through every day. I had to go on disability because of the

pain in my

body, but also because of all the other symptoms you mentioned. It is the

PA that

brings you the fog brain, the fatigue, the memory lapses, etc. It goes hand

in hand

with the joint pain. It's not bad enough we have the psoriasis to endure as

well the

side effects of the medicine that allows us to get out of bed, most days.

Brent posted an article a couple days ago that helps explain some possible

reasons

for some of our disease symptoms. It is related to the fright/flight

phenomenon. You

might want to check back a couple days and read his post if you missed it.

I've been sleeping a lot lately, too and for me that is a new thing. If I

sit to watch a

show on tv or try to read or even get comfortable and try to rest, I nod

off. Sitting up

usually, and then wake up with a broken neck because I had my chin on chest.

What

kills me though, when I sleep in my chair is the only time I can remember my

dreams.

Some days I feel as if I am going from nuts to bonkers, but the adventure

lies in waiting

to see whats next!! I realize you are only 30, but until you are able to

get your disease

under control, try to keep a positive outlook and educate your family to

help you ease

your distress. God bless,

Janet in Ca

[Guest guest]

I'm inserting my responses in ALL CAPS directly into your text dave

so that you can see it easier. I'm not yelling...lol.

>

> Hello All:

>

> I am wondering if there is anyone else out there that is on

Enbrel,

> and experiencing some of the symptoms that they were once feeling

> before taking the Enbrel. SOMETIMES ENBREL OR ANY MEDICATION WE

ARE ON LOOSES IT'S OOMPH AND YOU'LL NEED TO MOVE ON TO ANOTHER

BIOLOGIC. If so, what can be done on these bad days

> to feel better? SAME AS BEFORE ENBREL...YOU JUST GET BY UNTIL YOU

FIND A MEDICATION THAT WORKS Are there any medications out there

that can

> relieve some of these symptoms? PAIN MEDICATIONS CAN HELP MAKE IT

EASIER BUT MY EXPERIENCE IS THAT THEY DON'T HELP WITH THE STIFFNESS.

IF ONE PAIN MED MAKES YOU FEEL UNCOMFORTABLE, GO TO ANOTHER ONE.

THERE ARE MANY OUT THERE AND WHAT WORKS FOR ONE PERSON MAY NOT WORK

FOR ANOTHER...JUST LIKE WITH THE BIOLOGICS. IT IS POSSIBLE TO FIND A

PAIN MED THAT DOES NOT MAKE YOU LOOPY. Does diet and exercise

help /

> worsen anyone? MOST PEOPLE WILL AGREE THAT YOU'LL NEED TO GO WITH

LOW IMPACT EXERCISE AND AQUATIC EXERCISES ARE GREAT. YOU JUST CAN'T

OVER DO IT OR YOU'LL PAY UP THE NEXT DAY OR TWO. SOME PEOPLE DO FEEL

THAT CERTAIN FOODS MAKE THEM FLARE. OUR IMMUNE SYSTEMS ARE OUT OF

WHACK SO IT'S NOT SURPRISING THAT SOME OF US SUFFER FROM FOOD

ALLERGIES. BUT AGAIN...IT'S NOT THE SAME FOR ALL OF US. TOMATOES AND

NIGHTSHADE PLANTS MIGHT CAUSE YOU TO FLARE...OR NOT.

>

> I have been on Enbrel going on two years (diagnosed with PA), and

I

> am starting to have more and more bad days; bad days meaning

extreme

> fatigue, burning and pain in my joints (mainly lower back, Knees,

> and chest). For about a year and a half, I have been symptom free

> (about the time I joined this group), but I have started to notice

> that Enbrel's affect is weakening. SOUNDS LIKE IT.

>

> I try to relax at night and even though my joints burn with pain,

> they will not stop moving! For example, my knees burn and ache so

> bad that it drives me crazy and you would think that because they

> hurt, I would stop moving them! As soon as I focus on something

> else (take my mind off it like when watching TV), they start

moving

> again (unconsciously)! As if it where some type of torture

device!

> And then of course it hurts to move them because they burn and

> ache! Anyone else experience this type of symptom from PA? My

wife

> has told me that I do this in my sleep as well! It's like I can

not

> get any rest. The legs seem to dance even though they are

> exhausted. THERE IS ACTUALLY A DISORDER CALLED " RESTLESS LEG

SYNDROME " AND YOU CAN DO A SEARCH ON IT. THERE IS MEDICATION FOR IT.

PERHAPS THIS IS THE CULPRIT.

>

> I have also noticed some strange feelings throughout my days…

> Sometimes I feel completely exhausted right in the middle of the

> day. My body wants to shut down. I feel like putting my head on

my

> desk! I have trouble not doing it! I get up and walk around. I

> have noticed it right after I eat lunch. SO HAVE YOUR BLOOD SUGAR

AND THYROID CHECKED. TALK TO YOUR PCP ABOUT THIS. IT COULD BE THE PA

BUT YOU ALWAYS HAVE TO BE AWARE OF WHAT IS GOING ON IN YOUR BODY AND

BRING IT ALL UP WITH ONE OF YOUR DOCTORS....OR BOTH. REMEMBER THAT

YOU ARE PAYING THEM TO DO THIS JOB...DON'T FEEL LIKE YOU ARE PUTTING

THEM OUT AS WE TEND TO DO WHEN WE HAVE SO MANY ISSUES. IT'S THEIR

JOB. I have also noticed that

> my brain seems foggy at times. PA! I can't seem to think straight.

PA! I

> don't feel as sharp as I once did a year ago. PA! I have trouble

> bouncing from thought to thought and task to task. PA! I will

start

> something, and jump to something else without finishing the first

> thing. PA! I am easily distracted at this time. PA! I have also

noticed

> that I become very forgetful. PA! I find myself looking for words

to

> speak and I can't find them. I know what I want to stay, but

can't

> find the words I know to say it. I find myself thinking about the

> concept for a minute, and then realize what word I was looking

for.

> Am I losing my edge? NO....THIS IS CLASSIC BRAIN FOG. PA HAS IT.

MANY OTHER DISEASES USE THIS TERM AS WELL. I WAS JUST TALKING TO ONE

OF THE OTHER MEMBERS OF THIS GROUP LAST WEEK AND I LOST MY

PLACE...LOST MY THOUGHT RIGHT IN THE MIDDLE OF MY SENTENCE. I HAD TO

ASK FOR HELP IN FINISHING MY THOUGHTS. THANK GOODNESS I WAS WITH

SOMEONE WHO UNDERSTOOD THIS. IT'S EMBARASSING WHEN IT HAPPENS WITH

ANYONE ELSE. MY DAUGHTER IS USED TO IT.

>

> Sometimes my finger will swell up the size of a sausage…or my

chest

> plates feel like they are overlapping and cracking…knees and legs

> burn…lower back hurts and sticks…ankles swell and are sensitive to

> touch. Not to mention the lack of motivation and desire to sleep!

SOUNDS LIKE PA

>

> I have tried Arava, Naproxen, Methotrexate (Bad reaction…

> hospitalized from that), and Tylenol, I HAVE COINED THIS THE OGLW

CLUB....OH GOD LET IT WORK. but nothing seems to cure the

> bad days….Except sitting at home sleeping. The rheumy recommended

> Cortisone shots in the chest, legs, and back. I thought that was

a

> waste (not to mention insane). Let's inflict more pain! I can't

> imagine getting that in the chest plate! I have had it before in

my

> knees….Did not help. Anyone else agree / disagree? I have not

been

> back to him since! IT WORKS WONDERS FOR MANY PEOPLE. NOT FOR ME.

I'VE HAD THEM TOO. IT MIGHT NOT MEAN HE IS A BAD DOC....HE HAS

PROBABLY SEEN GREAT SUCCESS WITH IT IN MOST OF HIS PATIENTS. ASK HIM

WHAT OTHER OPTIONS THERE ARE. TALK TO HIM.

>

> You can imagine how this whole thing troubles me being 30 years

> old. No offense to anyone, but I feel 30 years older than I am.

I

> am trying to be the best husband / father that I can be, maintain

my

> career, continue my education and stay on top of my game in an

> atmosphere that is so competitive, but I my body is getting in the

> way of my minds ambition! SOMETIMES I FEEL THAT MY BODY HAS

BETRAYED ME. THIS IS NORMAL. NOT IDEAL BUT IT'S WHAT WE HAVE. I want

to keep going but I simply can't

> at times. YOU ARE NOT ALONE THERE. YOU HAVE A DISEASE AND THERE IS

A WAR GOING ON INSIDE YOUR BODY. IT'S TIRING. There is so much that

I want to do, and want to continue

> to do, but there are days that I have trouble getting out of bed

> (lack of motivation, tired, and pain). Most days are good, and I

> know I should not be complaining, as the good still usually

> outnumber the bad. SHARE ALL OF THIS WITH YOUR DOCTORS. THEY NEED

TO KNOW THE GOOD THE BAD AND THE UGLY IN ORDER TO PATTERN A

TREATMENT PLAN FOR YOU. IF YOU ARE NOT COMFORTABLE WITH THEIR

BEDSIDE MANNER...FIRE THEM AND MOVE ON TO SOMEONE WHO'S PERSONALITY

FITS YOURS. YOU WILL NEED TO FEEL GOOD ABOUT WHO IS TREATING YOU.

>

> I am just looking for any additional insight, home remedies,

> prescriptions, or even magic that anyone may know of that can help

> get me through the days. I am also curious if anyone else is on

> Enbrel and noticing that it is not working as well as it did. My

> Psoriasis is fine…no patches anywhere, but my bones feel like they

> are being eaten alive!

>

> I am seeking a pain management Dr.'s help tomorrow….maybe they

will

> be able to help… I'LL BE INTERESTED IN READING ABOUT HOW THAT

GOES. IT CAN GET BETTER. DON'T GIVE UP. LET YOUR RHEUMY KNOW THAT

THE ENBREL IS NOT WORKING AS WELL. -BETZThanks in advance to anyone

that replies.

>

[Guest guest]

Thanks for the response...It makes me feel slightly better that what

I am feeling is what is associated to PA. I have been feeling like

I am at the end of my rope trying to keep up with everything that I

normally tend too. I guess I have to start prioritizing as well as

figuring out what's going on with me. Can't wait until tomorrow. I

foresee more tests (blood work etc...) ;-)

Thanks,

Dave

> >

> > Hello All:

> >

> > I am wondering if there is anyone else out there that is on

> Enbrel,

> > and experiencing some of the symptoms that they were once

feeling

> > before taking the Enbrel. SOMETIMES ENBREL OR ANY MEDICATION WE

> ARE ON LOOSES IT'S OOMPH AND YOU'LL NEED TO MOVE ON TO ANOTHER

> BIOLOGIC. If so, what can be done on these bad days

> > to feel better? SAME AS BEFORE ENBREL...YOU JUST GET BY UNTIL

YOU

> FIND A MEDICATION THAT WORKS Are there any medications out there

> that can

> > relieve some of these symptoms? PAIN MEDICATIONS CAN HELP MAKE

IT

> EASIER BUT MY EXPERIENCE IS THAT THEY DON'T HELP WITH THE

STIFFNESS.

> IF ONE PAIN MED MAKES YOU FEEL UNCOMFORTABLE, GO TO ANOTHER ONE.

> THERE ARE MANY OUT THERE AND WHAT WORKS FOR ONE PERSON MAY NOT

WORK

> FOR ANOTHER...JUST LIKE WITH THE BIOLOGICS. IT IS POSSIBLE TO FIND

A

> PAIN MED THAT DOES NOT MAKE YOU LOOPY. Does diet and exercise

> help /

> > worsen anyone? MOST PEOPLE WILL AGREE THAT YOU'LL NEED TO GO

WITH

> LOW IMPACT EXERCISE AND AQUATIC EXERCISES ARE GREAT. YOU JUST

CAN'T

> OVER DO IT OR YOU'LL PAY UP THE NEXT DAY OR TWO. SOME PEOPLE DO

FEEL

> THAT CERTAIN FOODS MAKE THEM FLARE. OUR IMMUNE SYSTEMS ARE OUT OF

> WHACK SO IT'S NOT SURPRISING THAT SOME OF US SUFFER FROM FOOD

> ALLERGIES. BUT AGAIN...IT'S NOT THE SAME FOR ALL OF US. TOMATOES

AND

> NIGHTSHADE PLANTS MIGHT CAUSE YOU TO FLARE...OR NOT.

> >

> > I have been on Enbrel going on two years (diagnosed with PA),

and

> I

> > am starting to have more and more bad days; bad days meaning

> extreme

> > fatigue, burning and pain in my joints (mainly lower back,

Knees,

> > and chest). For about a year and a half, I have been symptom

free

> > (about the time I joined this group), but I have started to

notice

> > that Enbrel's affect is weakening. SOUNDS LIKE IT.

> >

> > I try to relax at night and even though my joints burn with

pain,

> > they will not stop moving! For example, my knees burn and ache

so

> > bad that it drives me crazy and you would think that because

they

> > hurt, I would stop moving them! As soon as I focus on something

> > else (take my mind off it like when watching TV), they start

> moving

> > again (unconsciously)! As if it where some type of torture

> device!

> > And then of course it hurts to move them because they burn and

> > ache! Anyone else experience this type of symptom from PA? My

> wife

> > has told me that I do this in my sleep as well! It's like I can

> not

> > get any rest. The legs seem to dance even though they are

> > exhausted. THERE IS ACTUALLY A DISORDER CALLED " RESTLESS LEG

> SYNDROME " AND YOU CAN DO A SEARCH ON IT. THERE IS MEDICATION FOR

IT.

> PERHAPS THIS IS THE CULPRIT.

> >

> > I have also noticed some strange feelings throughout my days…

> > Sometimes I feel completely exhausted right in the middle of the

> > day. My body wants to shut down. I feel like putting my head

on

> my

> > desk! I have trouble not doing it! I get up and walk around.

I

> > have noticed it right after I eat lunch. SO HAVE YOUR BLOOD

SUGAR

> AND THYROID CHECKED. TALK TO YOUR PCP ABOUT THIS. IT COULD BE THE

PA

> BUT YOU ALWAYS HAVE TO BE AWARE OF WHAT IS GOING ON IN YOUR BODY

AND

> BRING IT ALL UP WITH ONE OF YOUR DOCTORS....OR BOTH. REMEMBER THAT

> YOU ARE PAYING THEM TO DO THIS JOB...DON'T FEEL LIKE YOU ARE

PUTTING

> THEM OUT AS WE TEND TO DO WHEN WE HAVE SO MANY ISSUES. IT'S THEIR

> JOB. I have also noticed that

> > my brain seems foggy at times. PA! I can't seem to think

straight.

> PA! I

> > don't feel as sharp as I once did a year ago. PA! I have trouble

> > bouncing from thought to thought and task to task. PA! I will

> start

> > something, and jump to something else without finishing the

first

> > thing. PA! I am easily distracted at this time. PA! I have also

> noticed

> > that I become very forgetful. PA! I find myself looking for

words

> to

> > speak and I can't find them. I know what I want to stay, but

> can't

> > find the words I know to say it. I find myself thinking about

the

> > concept for a minute, and then realize what word I was looking

> for.

> > Am I losing my edge? NO....THIS IS CLASSIC BRAIN FOG. PA HAS IT.

> MANY OTHER DISEASES USE THIS TERM AS WELL. I WAS JUST TALKING TO

ONE

> OF THE OTHER MEMBERS OF THIS GROUP LAST WEEK AND I LOST MY

> PLACE...LOST MY THOUGHT RIGHT IN THE MIDDLE OF MY SENTENCE. I HAD

TO

> ASK FOR HELP IN FINISHING MY THOUGHTS. THANK GOODNESS I WAS WITH

> SOMEONE WHO UNDERSTOOD THIS. IT'S EMBARASSING WHEN IT HAPPENS WITH

> ANYONE ELSE. MY DAUGHTER IS USED TO IT.

> >

> > Sometimes my finger will swell up the size of a sausage…or my

> chest

> > plates feel like they are overlapping and cracking…knees and

legs

> > burn…lower back hurts and sticks…ankles swell and are sensitive

to

> > touch. Not to mention the lack of motivation and desire to

sleep!

> SOUNDS LIKE PA

> >

> > I have tried Arava, Naproxen, Methotrexate (Bad reaction…

> > hospitalized from that), and Tylenol, I HAVE COINED THIS THE

OGLW

> CLUB....OH GOD LET IT WORK. but nothing seems to cure the

> > bad days….Except sitting at home sleeping. The rheumy

recommended

> > Cortisone shots in the chest, legs, and back. I thought that

was

> a

> > waste (not to mention insane). Let's inflict more pain! I

can't

> > imagine getting that in the chest plate! I have had it before

in

> my

> > knees….Did not help. Anyone else agree / disagree? I have not

> been

> > back to him since! IT WORKS WONDERS FOR MANY PEOPLE. NOT FOR

ME.

> I'VE HAD THEM TOO. IT MIGHT NOT MEAN HE IS A BAD DOC....HE HAS

> PROBABLY SEEN GREAT SUCCESS WITH IT IN MOST OF HIS PATIENTS. ASK

HIM

> WHAT OTHER OPTIONS THERE ARE. TALK TO HIM.

> >

> > You can imagine how this whole thing troubles me being 30 years

> > old. No offense to anyone, but I feel 30 years older than I

am.

> I

> > am trying to be the best husband / father that I can be,

maintain

> my

> > career, continue my education and stay on top of my game in an

> > atmosphere that is so competitive, but I my body is getting in

the

> > way of my minds ambition! SOMETIMES I FEEL THAT MY BODY HAS

> BETRAYED ME. THIS IS NORMAL. NOT IDEAL BUT IT'S WHAT WE HAVE. I

want

> to keep going but I simply can't

> > at times. YOU ARE NOT ALONE THERE. YOU HAVE A DISEASE AND THERE

IS

> A WAR GOING ON INSIDE YOUR BODY. IT'S TIRING. There is so much

that

> I want to do, and want to continue

> > to do, but there are days that I have trouble getting out of bed

> > (lack of motivation, tired, and pain). Most days are good, and

I

> > know I should not be complaining, as the good still usually

> > outnumber the bad. SHARE ALL OF THIS WITH YOUR DOCTORS. THEY

NEED

> TO KNOW THE GOOD THE BAD AND THE UGLY IN ORDER TO PATTERN A

> TREATMENT PLAN FOR YOU. IF YOU ARE NOT COMFORTABLE WITH THEIR

> BEDSIDE MANNER...FIRE THEM AND MOVE ON TO SOMEONE WHO'S

PERSONALITY

> FITS YOURS. YOU WILL NEED TO FEEL GOOD ABOUT WHO IS TREATING YOU.

> >

> > I am just looking for any additional insight, home remedies,

> > prescriptions, or even magic that anyone may know of that can

help

> > get me through the days. I am also curious if anyone else is on

> > Enbrel and noticing that it is not working as well as it did.

My

> > Psoriasis is fine…no patches anywhere, but my bones feel like

they

> > are being eaten alive!

> >

> > I am seeking a pain management Dr.'s help tomorrow….maybe they

> will

> > be able to help… I'LL BE INTERESTED IN READING ABOUT HOW THAT

> GOES. IT CAN GET BETTER. DON'T GIVE UP. LET YOUR RHEUMY KNOW THAT

> THE ENBREL IS NOT WORKING AS WELL. -BETZThanks in advance to

anyone

> that replies.

> >

>

[Guest guest]

Thanks for the response...I am sorry to hear what has happened to

you. I will keep what you have said in mind the next time I start

feeling frustrated and like I have lost. After being on Enbrel and

forgetting what it was like to hurt, it is tough coming back to

reality knowing that I do have a disease. It's hard to even imagine

that it has happened to me. I am just curious as to what else I can

even try…I know that some things work better for others. Maybe it's

time to try Remicade or Humira…

Thanks,

Dave

>

> Hello,

> I'm so sorry you are feeling such frustration along with your

pain. You

> just described

> what we all go through every day. I had to go on disability

because of the

> pain in my

> body, but also because of all the other symptoms you mentioned.

It is the

> PA that

> brings you the fog brain, the fatigue, the memory lapses, etc.

It goes hand

> in hand

> with the joint pain. It's not bad enough we have the psoriasis

to endure as

> well the

> side effects of the medicine that allows us to get out of bed,

most days.

> Brent posted an article a couple days ago that helps explain some

possible

> reasons

> for some of our disease symptoms. It is related to the

fright/flight

> phenomenon. You

> might want to check back a couple days and read his post if you

missed it.

> I've been sleeping a lot lately, too and for me that is a new

thing. If I

> sit to watch a

> show on tv or try to read or even get comfortable and try to rest,

I nod

> off. Sitting up

> usually, and then wake up with a broken neck because I had my chin

on chest.

> What

> kills me though, when I sleep in my chair is the only time I can

remember my

> dreams.

> Some days I feel as if I am going from nuts to bonkers, but the

adventure

> lies in waiting

> to see whats next!! I realize you are only 30, but until you are

able to

> get your disease

> under control, try to keep a positive outlook and educate your

family to

> help you ease

> your distress. God bless,

>

> Janet in Ca

>

>

>

[Guest guest]

Dave....we are all pretty cautious about SAYING something is PA

since I don't think any of us are doctors unless someone is holding

out on us. But I can tell you it all sounds VERY familiar to me as

it probably does to others on here. It's scary I know. Not being

SURE and wanting to make sure you are not misdiagnosed especially

when you are still trying to take care of your family and keep up

with your career and plan for your future. Beleive me....I get this.

I'm a single mom with a child who has special needs and there is NO

time to take care of my issues when she is with me. I have 3 nights

a week when she is with her father but that's when I'm seeing

doctors and working long hours. It can be done. You seem like a man

of character. I think you'll make it and I pray that you'll find

your magic bullet. Keep your sense of humor. I think that helps a

great deal. We have a choice of whether we are going to be an

inspiration to our friends and loved ones or be a pain in the butt

to them. We don't have many choices but we do get to chose how we

are going to react to this mess. I'm guessing you get that. I hope

your family has been supportive. I think if you smile and joke

through it, it helps the kids. One day my daughter wanted me to play

ball with her when I could hardly stand let alone walk. So we sat me

in a chair out in the yard and she threw the ball at me or I threw

it at her from the chair. We laughed so hard I just about fell out

of my chair. Another time I could stand a bit but was so slow

walking....like Fred Sanford.....that we played ball with everyone

walking like me and it was too silly. I knew it was going to be ok

when my daughter said " Mom...you might be crippled but you are the

funnest Mom in the neighborhood! " We have to decide how we want our

kids to remember us....PA or not. Not that I WANT PA but I think it

gives us an edge as parents that well parents don't get. We are

forced to be more intimate with our partners (not that I would know

that right now...lol) and our children and our friends. We have to

tell them how we are feeling because they are going to ask when we

walk funny or drop something. We actually get to be closer to the

people around us if we are open to it. The other option is to shut

them all out. Keep considering your family and you'll get better

quicker and they will be effected in a more postive way. Hang in

there and good luck with the Dr. tomorrow. I take an aspirin before

I go in and the blood comes out easier. -Betz

[Guest guest]

Hi Dave,

First off, I'm sorry that you are suffering!!

I was on Enbrel, and it put me in complete remission for 2.5yrs...

the past 2 yrs it has been helping less and less and less. So to

answer your question, yes, it's somewhat common for meds to stop

working after awhile. Then you go on the drug merry-go-round until

you find something else that helps for awhile.

The brain fog you are experiencing goes along with arthritis. It

drives me crazy when I can't think what I was going to say, or

searching for WORDS to say what I mean. When I feel better, that

goes away, so at least I don't have to worry I have early onset

alzheimers (I'm 34yrs old).

I got an injection in my knee called Synvisc... it's for

osteoarthritis, but it helped reduce my pain about 60%... it's

basically a thick oily fluid which lubricates the joint. I had

narrowing of the joint space, but without any damage really. The

Synvisc increased the space a bit.

-Marietta

> I am wondering if there is anyone else out there that is on Enbrel,

> and experiencing some of the symptoms that they were once feeling

> before taking the Enbrel. If so, what can be done on these bad

days

> to feel better? Are there any medications out there that can

> relieve some of these symptoms?

> I am seeking a pain management Dr.'s help tomorrow….maybe they will

> be able to help…Thanks in advance to anyone that replies.

>

[Guest guest]

my husband was on enbrel and had to stop it because he developed a nerve disease

called chronic inflammatory demylenating polyneuropathy(cidp)he has a lot of

burning,numbness and pain

misty

Dave <scardn96@...> wrote:

Hello All:

I am wondering if there is anyone else out there that is on Enbrel,

and experiencing some of the symptoms that they were once feeling

before taking the Enbrel. If so, what can be done on these bad days

to feel better? Are there any medications out there that can

relieve some of these symptoms? Does diet and exercise help /

worsen anyone?

I have been on Enbrel going on two years (diagnosed with PA), and I

am starting to have more and more bad days; bad days meaning extreme

fatigue, burning and pain in my joints (mainly lower back, Knees,

and chest). For about a year and a half, I have been symptom free

(about the time I joined this group), but I have started to notice

that Enbrel's affect is weakening.

I try to relax at night and even though my joints burn with pain,

they will not stop moving! For example, my knees burn and ache so

bad that it drives me crazy and you would think that because they

hurt, I would stop moving them! As soon as I focus on something

else (take my mind off it like when watching TV), they start moving

again (unconsciously)! As if it where some type of torture device!

And then of course it hurts to move them because they burn and

ache! Anyone else experience this type of symptom from PA? My wife

has told me that I do this in my sleep as well! It's like I can not

get any rest. The legs seem to dance even though they are

exhausted.

I have also noticed some strange feelings throughout my days…

Sometimes I feel completely exhausted right in the middle of the

day. My body wants to shut down. I feel like putting my head on my

desk! I have trouble not doing it! I get up and walk around. I

have noticed it right after I eat lunch. I have also noticed that

my brain seems foggy at times. I can't seem to think straight. I

don't feel as sharp as I once did a year ago. I have trouble

bouncing from thought to thought and task to task. I will start

something, and jump to something else without finishing the first

thing. I am easily distracted at this time. I have also noticed

that I become very forgetful. I find myself looking for words to

speak and I can't find them. I know what I want to stay, but can't

find the words I know to say it. I find myself thinking about the

concept for a minute, and then realize what word I was looking for.

Am I losing my edge?

Sometimes my finger will swell up the size of a sausage…or my chest

plates feel like they are overlapping and cracking…knees and legs

burn…lower back hurts and sticks…ankles swell and are sensitive to

touch. Not to mention the lack of motivation and desire to sleep!

I have tried Arava, Naproxen, Methotrexate (Bad reaction…

hospitalized from that), and Tylenol, but nothing seems to cure the

bad days….Except sitting at home sleeping. The rheumy recommended

Cortisone shots in the chest, legs, and back. I thought that was a

waste (not to mention insane). Let's inflict more pain! I can't

imagine getting that in the chest plate! I have had it before in my

knees….Did not help. Anyone else agree / disagree? I have not been

back to him since!

You can imagine how this whole thing troubles me being 30 years

old. No offense to anyone, but I feel 30 years older than I am. I

am trying to be the best husband / father that I can be, maintain my

career, continue my education and stay on top of my game in an

atmosphere that is so competitive, but I my body is getting in the

way of my minds ambition! I want to keep going but I simply can't

at times. There is so much that I want to do, and want to continue

to do, but there are days that I have trouble getting out of bed

(lack of motivation, tired, and pain). Most days are good, and I

know I should not be complaining, as the good still usually

outnumber the bad.

I am just looking for any additional insight, home remedies,

prescriptions, or even magic that anyone may know of that can help

get me through the days. I am also curious if anyone else is on

Enbrel and noticing that it is not working as well as it did. My

Psoriasis is fine…no patches anywhere, but my bones feel like they

are being eaten alive!

I am seeking a pain management Dr.'s help tomorrow….maybe they will

be able to help…Thanks in advance to anyone that replies.

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

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[Guest guest]

I had to stop Enbrel for the same reason as Misty's husband.

Although it helped much of the arthritis, it caused a whole range of

unpleasant/frightening symptoms.

Brent

" my husband was on enbrel and had to stop it because he developed a

nerve disease called chronic inflammatory demylenating polyneuropathy

(cidp)he has a lot of burning,numbness and pain "

[Guest guest]

I had no idea this was a symptom...Thanks for the heads up! I am

feeling better today! They prescribed me baclofin and hydrocodone for

now. It seems to be taking away the pain and burning for now....

We'll see how long this lasts!

Dave

>

> I had to stop Enbrel for the same reason as Misty's husband.

> Although it helped much of the arthritis, it caused a whole range of

> unpleasant/frightening symptoms.

> Brent

>

>

> " my husband was on enbrel and had to stop it because he developed a

> nerve disease called chronic inflammatory demylenating polyneuropathy

> (cidp)he has a lot of burning,numbness and pain "

>

[Guest guest]

In a message dated 9/13/2006 12:08:12 P.M. Eastern Standard Time,

scardn96@... writes:

I try to relax at night and even though my joints burn with pain,

they will not stop moving! For example, my knees burn and ache so

bad that it drives me crazy and you would think that because they

hurt, I would stop moving them! As soon as I focus on something

else (take my mind off it like when watching TV), they start moving

again (unconsciously)again (unconsciously)<WBR>! As if it where som

And then of course it hurts to move them because they burn and

ache! Anyone else experience this type of symptom from PA? My wife

has told me that I do this in my sleep as well! It's like I can not

get any rest. The legs seem to dance even though they are

exhausted.

This sounds like Restless Leg Syndrome. I take an anti seizure drug every

evening to help slow down the movement. This Syndrome disrupts your sleep the

same as Sleep Apnea does. That's one reason for your daytime sleepiness.

[Guest guest]

Well,

I went to a pain management Dr. and things are going much better for

me right now. They prescribed a muscle relaxer, something for the

burning, and some pain meds. The combination of the two pills seem

to be working. I have not been in pain nor do i feel the burning

like i used to. I almost forgot what it feels like to not be in

pain.

The ol' legs are still jumpy all day and night, but they don't

hurt! I suppose the pain meds just trick my mind into not feeling

pain, but at least I can function! I am sure they will be modifying

doses etc... to try and make sure there is a good balance.

I am just happy someone finally did something to help. I am so sick

of going to Dr.'s who make you suffer for months before even

attempting to rid you of pain.

When I first went in and started talking to the DR., I thought I was

in the wrong place! They said they couldn't treat PA...!!! Meaning

that they can not prescribe arthritis type medicine...but they can

prescribe for pain and asked if I was willing to take it! I quickly

replied YES!

So far so good! Thanks for everyone's advice and support thus far.

Hope these good feelings keep up, though I anticipate that my body

will get used to pain meds. eventually. I am enjoying this feeling

while I can!

Thanks All,

Dave

> >

> > Hello All:

> >

> > I am wondering if there is anyone else out there that is on

> Enbrel,

> > and experiencing some of the symptoms that they were once

feeling

> > before taking the Enbrel. SOMETIMES ENBREL OR ANY MEDICATION WE

> ARE ON LOOSES IT'S OOMPH AND YOU'LL NEED TO MOVE ON TO ANOTHER

> BIOLOGIC. If so, what can be done on these bad days

> > to feel better? SAME AS BEFORE ENBREL...YOU JUST GET BY UNTIL

YOU

> FIND A MEDICATION THAT WORKS Are there any medications out there

> that can

> > relieve some of these symptoms? PAIN MEDICATIONS CAN HELP MAKE

IT

> EASIER BUT MY EXPERIENCE IS THAT THEY DON'T HELP WITH THE

STIFFNESS.

> IF ONE PAIN MED MAKES YOU FEEL UNCOMFORTABLE, GO TO ANOTHER ONE.

> THERE ARE MANY OUT THERE AND WHAT WORKS FOR ONE PERSON MAY NOT

WORK

> FOR ANOTHER...JUST LIKE WITH THE BIOLOGICS. IT IS POSSIBLE TO FIND

A

> PAIN MED THAT DOES NOT MAKE YOU LOOPY. Does diet and exercise

> help /

> > worsen anyone? MOST PEOPLE WILL AGREE THAT YOU'LL NEED TO GO

WITH

> LOW IMPACT EXERCISE AND AQUATIC EXERCISES ARE GREAT. YOU JUST

CAN'T

> OVER DO IT OR YOU'LL PAY UP THE NEXT DAY OR TWO. SOME PEOPLE DO

FEEL

> THAT CERTAIN FOODS MAKE THEM FLARE. OUR IMMUNE SYSTEMS ARE OUT OF

> WHACK SO IT'S NOT SURPRISING THAT SOME OF US SUFFER FROM FOOD

> ALLERGIES. BUT AGAIN...IT'S NOT THE SAME FOR ALL OF US. TOMATOES

AND

> NIGHTSHADE PLANTS MIGHT CAUSE YOU TO FLARE...OR NOT.

> >

> > I have been on Enbrel going on two years (diagnosed with PA),

and

> I

> > am starting to have more and more bad days; bad days meaning

> extreme

> > fatigue, burning and pain in my joints (mainly lower back,

Knees,

> > and chest). For about a year and a half, I have been symptom

free

> > (about the time I joined this group), but I have started to

notice

> > that Enbrel's affect is weakening. SOUNDS LIKE IT.

> >

> > I try to relax at night and even though my joints burn with

pain,

> > they will not stop moving! For example, my knees burn and ache

so

> > bad that it drives me crazy and you would think that because

they

> > hurt, I would stop moving them! As soon as I focus on something

> > else (take my mind off it like when watching TV), they start

> moving

> > again (unconsciously)! As if it where some type of torture

> device!

> > And then of course it hurts to move them because they burn and

> > ache! Anyone else experience this type of symptom from PA? My

> wife

> > has told me that I do this in my sleep as well! It's like I can

> not

> > get any rest. The legs seem to dance even though they are

> > exhausted. THERE IS ACTUALLY A DISORDER CALLED " RESTLESS LEG

> SYNDROME " AND YOU CAN DO A SEARCH ON IT. THERE IS MEDICATION FOR

IT.

> PERHAPS THIS IS THE CULPRIT.

> >

> > I have also noticed some strange feelings throughout my days…

> > Sometimes I feel completely exhausted right in the middle of the

> > day. My body wants to shut down. I feel like putting my head

on

> my

> > desk! I have trouble not doing it! I get up and walk around.

I

> > have noticed it right after I eat lunch. SO HAVE YOUR BLOOD

SUGAR

> AND THYROID CHECKED. TALK TO YOUR PCP ABOUT THIS. IT COULD BE THE

PA

> BUT YOU ALWAYS HAVE TO BE AWARE OF WHAT IS GOING ON IN YOUR BODY

AND

> BRING IT ALL UP WITH ONE OF YOUR DOCTORS....OR BOTH. REMEMBER THAT

> YOU ARE PAYING THEM TO DO THIS JOB...DON'T FEEL LIKE YOU ARE

PUTTING

> THEM OUT AS WE TEND TO DO WHEN WE HAVE SO MANY ISSUES. IT'S THEIR

> JOB. I have also noticed that

> > my brain seems foggy at times. PA! I can't seem to think

straight.

> PA! I

> > don't feel as sharp as I once did a year ago. PA! I have trouble

> > bouncing from thought to thought and task to task. PA! I will

> start

> > something, and jump to something else without finishing the

first

> > thing. PA! I am easily distracted at this time. PA! I have also

> noticed

> > that I become very forgetful. PA! I find myself looking for

words

> to

> > speak and I can't find them. I know what I want to stay, but

> can't

> > find the words I know to say it. I find myself thinking about

the

> > concept for a minute, and then realize what word I was looking

> for.

> > Am I losing my edge? NO....THIS IS CLASSIC BRAIN FOG. PA HAS IT.

> MANY OTHER DISEASES USE THIS TERM AS WELL. I WAS JUST TALKING TO

ONE

> OF THE OTHER MEMBERS OF THIS GROUP LAST WEEK AND I LOST MY

> PLACE...LOST MY THOUGHT RIGHT IN THE MIDDLE OF MY SENTENCE. I HAD

TO

> ASK FOR HELP IN FINISHING MY THOUGHTS. THANK GOODNESS I WAS WITH

> SOMEONE WHO UNDERSTOOD THIS. IT'S EMBARASSING WHEN IT HAPPENS WITH

> ANYONE ELSE. MY DAUGHTER IS USED TO IT.

> >

> > Sometimes my finger will swell up the size of a sausage…or my

> chest

> > plates feel like they are overlapping and cracking…knees and

legs

> > burn…lower back hurts and sticks…ankles swell and are sensitive

to

> > touch. Not to mention the lack of motivation and desire to

sleep!

> SOUNDS LIKE PA

> >

> > I have tried Arava, Naproxen, Methotrexate (Bad reaction…

> > hospitalized from that), and Tylenol, I HAVE COINED THIS THE

OGLW

> CLUB....OH GOD LET IT WORK. but nothing seems to cure the

> > bad days….Except sitting at home sleeping. The rheumy

recommended

> > Cortisone shots in the chest, legs, and back. I thought that

was

> a

> > waste (not to mention insane). Let's inflict more pain! I

can't

> > imagine getting that in the chest plate! I have had it before

in

> my

> > knees….Did not help. Anyone else agree / disagree? I have not

> been

> > back to him since! IT WORKS WONDERS FOR MANY PEOPLE. NOT FOR

ME.

> I'VE HAD THEM TOO. IT MIGHT NOT MEAN HE IS A BAD DOC....HE HAS

> PROBABLY SEEN GREAT SUCCESS WITH IT IN MOST OF HIS PATIENTS. ASK

HIM

> WHAT OTHER OPTIONS THERE ARE. TALK TO HIM.

> >

> > You can imagine how this whole thing troubles me being 30 years

> > old. No offense to anyone, but I feel 30 years older than I

am.

> I

> > am trying to be the best husband / father that I can be,

maintain

> my

> > career, continue my education and stay on top of my game in an

> > atmosphere that is so competitive, but I my body is getting in

the

> > way of my minds ambition! SOMETIMES I FEEL THAT MY BODY HAS

> BETRAYED ME. THIS IS NORMAL. NOT IDEAL BUT IT'S WHAT WE HAVE. I

want

> to keep going but I simply can't

> > at times. YOU ARE NOT ALONE THERE. YOU HAVE A DISEASE AND THERE

IS

> A WAR GOING ON INSIDE YOUR BODY. IT'S TIRING. There is so much

that

> I want to do, and want to continue

> > to do, but there are days that I have trouble getting out of bed

> > (lack of motivation, tired, and pain). Most days are good, and

I

> > know I should not be complaining, as the good still usually

> > outnumber the bad. SHARE ALL OF THIS WITH YOUR DOCTORS. THEY

NEED

> TO KNOW THE GOOD THE BAD AND THE UGLY IN ORDER TO PATTERN A

> TREATMENT PLAN FOR YOU. IF YOU ARE NOT COMFORTABLE WITH THEIR

> BEDSIDE MANNER...FIRE THEM AND MOVE ON TO SOMEONE WHO'S

PERSONALITY

> FITS YOURS. YOU WILL NEED TO FEEL GOOD ABOUT WHO IS TREATING YOU.

> >

> > I am just looking for any additional insight, home remedies,

> > prescriptions, or even magic that anyone may know of that can

help

> > get me through the days. I am also curious if anyone else is on

> > Enbrel and noticing that it is not working as well as it did.

My

> > Psoriasis is fine…no patches anywhere, but my bones feel like

they

> > are being eaten alive!

> >

> > I am seeking a pain management Dr.'s help tomorrow….maybe they

> will

> > be able to help… I'LL BE INTERESTED IN READING ABOUT HOW THAT

> GOES. IT CAN GET BETTER. DON'T GIVE UP. LET YOUR RHEUMY KNOW THAT

> THE ENBREL IS NOT WORKING AS WELL. -BETZThanks in advance to

anyone

> that replies.

> >

>

[Guest guest]

Dave! Great news! Hoping it keeps getting even better for you still.

Check out that " Restless Leg " thing with your primary care doctor.

There IS a medication specifically for that syndrome. -Betz

[Guest guest]

Just relaying a bit of my experience...

I finally found an orthopedic surgeon who knew how to place and

adequately inject my knees with cortisone....AND HE USED SOMETHING

TO 'FREEZE' THE SITE FIRST!!!!! It is very important that the doc

know *your* knee/shoulder/whatever very well. As an old nurse, I

was quite impressed with this guy's methods...He did an MRI the same

day (next door to his office) then read it himself prior to the

injections.

Perhaps because of my doc's methods, it worked for about three

months. I don't mind going back to him for more if the pain becomes

as excrutiating as it was then.

Another little thing. A biologic may be working to PREVENT more

damage although you may become symptomatic... It's a good idea to

confirm if new damage is occuring prior to changing since it takes

so long for the anti-TNF or whatever to become effective. It may be

that the OTHER PA symptoms of misery are rearing their ugly heads.

It happens.

Just MHO