New with questions

August 11, 2003

Hi Kim & welcome to our group:You will more than likely be pleasantly surprised at how well Guss will sleep in his band! He can sleep in whatever position he likes, he won't need to be repositioned any way. Most kids, my daughter included, sleep just like they always had before the band. My daughter slept the entire night her first night banded and never had any problems after that with her band on. I couldn't believe it!!!

Some babies do take a bit longer to adjust to sleeping w/their new band, but usually within a few days, they've also adjusted just fine.

The band must be kept on 23 hrs a day, during the one hr off is when parents clean the band. Some parents might quickly remove the band to wipe sweat from the child's head if they're real sweaty, but otherwise, 23 hrs a day, every day is a strict rule w/these bands to produce optimum correction

Good luck next week Glad you have found us. We look forward to hearing of Gus's rounding head over the next few mos..

Debbie Abby's mom DOCgrad

MIkdaekept <kim.daeke@...> wrote:

Hi everyone! My son, Gus (7 mos), is getting the DOC Band Aug. 19. I have read some great info out there about adjusting to the band, but I am still very worried about the sleep thing. My first question is this--do the kids have to change their sleep positions after they are banded? Gus will ONLY sleep on his back, despite our efforts to get him on his side. I'm afraid the band will really disrupt his sleep (which isn't that great to begin with). My other question is with respect to how long every day to leave on the band. I know the protocol says 23 hours, but there seems to be a lot of talk about taking it off to clean, when the child gets hot, etc. I live in NC and it is HOT right now. Not to mention an upcoming vacation at the beach.I really appreciate all the info on this

group site. Plagio is really a fairly "new" thing--I am a PT (but don't work with kids) and I never even heard of it until my son had it. I am thinking about sending info to some of our professional mags and also getting the word out at the peds office and birth center. I am lucky--my ped was awesome and suggested the CT consult at the same visit we were asking about the "flat head".For more plagio info

August 11, 2003

Hi and Welcome to group! I love the name Gus!!!! I want a boy to

name Gus. Not going to happen.....Maybe I can talk on of my

daughter's into naming a grandson Gus.....*slap* Wake up Dustie!

Sorry about that. It sounds like your doing a great job and a big

applaud to your ped for referring Gus to a specialist.

My daughter was 8.5 months when she started wearing her band and she

didn't miss a wink of sleep due to the band. It shouldn' matter

which position he sleeps in when he is wearing the band. Good Luck

and let us know when the band comes in.

Dustie, mom to , DOC Grad'03

P.S. I really do love the name Gus!!!!!! lol

--- In Plagiocephaly , " kdaekept " <kim.daeke@r...>

wrote:

> Hi everyone! My son, Gus (7 mos), is getting the DOC Band Aug.

19.

> I have read some great info out there about adjusting to the band,

> but I am still very worried about the sleep thing. My first

question

> is this--do the kids have to change their sleep positions after

they

> are banded? Gus will ONLY sleep on his back, despite our efforts

to

> get him on his side. I'm afraid the band will really disrupt his

> sleep (which isn't that great to begin with). My other question is

> with respect to how long every day to leave on the band. I know

the

> protocol says 23 hours, but there seems to be a lot of talk about

> taking it off to clean, when the child gets hot, etc. I live in NC

> and it is HOT right now. Not to mention an upcoming vacation at

the

> beach.

>

> I really appreciate all the info on this group site. Plagio is

> really a fairly " new " thing--I am a PT (but don't work with kids)

and

> I never even heard of it until my son had it. I am thinking about

> sending info to some of our professional mags and also getting the

> word out at the peds office and birth center. I am lucky--my ped

was

> awesome and suggested the CT consult at the same visit we were

asking

> about the " flat head " .

August 11, 2003

Hi there! I had the same concerns before my boys were banded.

would only sleep on his back - no matter what we did! He

almost instantly started sleeping on his tummy when he was banded.

Neither of the boys really ever had a problem sleeping. We are in

Texas and it is HOT HOT HOT here. We kept the bands on as much as

possible (the 23 hrs) - but did give them a bit of a break on the

weekends (usually took a couple hrs off to swim, etc one day during

the weekend.) If Gus is like my boys, he will adjust to the band

quicker than you do!

Good luck!

mom to Nolan & , DOC banded 3/26/03-7/23/03 (Nolan), 8/6/03

( - waiting for band #2 now) both severe brachy

--- In Plagiocephaly , " kdaekept " <kim.daeke@r...>

wrote:

> Hi everyone! My son, Gus (7 mos), is getting the DOC Band Aug.

19.

> I have read some great info out there about adjusting to the band,

> but I am still very worried about the sleep thing. My first

question

> is this--do the kids have to change their sleep positions after

they

> are banded? Gus will ONLY sleep on his back, despite our efforts

to

> get him on his side. I'm afraid the band will really disrupt his

> sleep (which isn't that great to begin with). My other question is

> with respect to how long every day to leave on the band. I know

the

> protocol says 23 hours, but there seems to be a lot of talk about

> taking it off to clean, when the child gets hot, etc. I live in NC

> and it is HOT right now. Not to mention an upcoming vacation at

the

> beach.

>

> I really appreciate all the info on this group site. Plagio is

> really a fairly " new " thing--I am a PT (but don't work with kids)

and

> I never even heard of it until my son had it. I am thinking about

> sending info to some of our professional mags and also getting the

> word out at the peds office and birth center. I am lucky--my ped

was

> awesome and suggested the CT consult at the same visit we were

asking

> about the " flat head " .

August 11, 2003

Hi,

Welcome to the group. I see that you've already received the answers

to your questions, so I'll just welcome you to the group.

We're glad to have you with us.

--- In Plagiocephaly , " kdaekept " <kim.daeke@r...>

wrote:

> Hi everyone! My son, Gus (7 mos), is getting the DOC Band Aug.

19.

> I have read some great info out there about adjusting to the band,

> but I am still very worried about the sleep thing. My first

question

> is this--do the kids have to change their sleep positions after

they

> are banded? Gus will ONLY sleep on his back, despite our efforts

to

> get him on his side. I'm afraid the band will really disrupt his

> sleep (which isn't that great to begin with). My other question is

> with respect to how long every day to leave on the band. I know

the

> protocol says 23 hours, but there seems to be a lot of talk about

> taking it off to clean, when the child gets hot, etc. I live in NC

> and it is HOT right now. Not to mention an upcoming vacation at

the

> beach.

>

> I really appreciate all the info on this group site. Plagio is

> really a fairly " new " thing--I am a PT (but don't work with kids)

and

> I never even heard of it until my son had it. I am thinking about

> sending info to some of our professional mags and also getting the

> word out at the peds office and birth center. I am lucky--my ped

was

> awesome and suggested the CT consult at the same visit we were

asking

> about the " flat head " .

August 11, 2003

Hello and Welcome to the group! I had never heard of plagio until my

second son was born. Our adjustment went really well but Xavier was

was younger than Gus will be he was a week shy of 4 months but he

should do fine. I ueally only take Xavier's band off when I change

him out of his jammies in the morning (5 minutes) and I take it off

at night to bathe him and clean it out for the hour. We are in AZ and

there have been days that we have been swimming or out and I have

taken it off for 2 hours a day but usually its on for 23 hours a day

and it is 115 degrees here and he does fine w/it. I have been one of

the lucky parents who have gone in to the fitting and had a perfect

fit (no adjustments) and no red spots so it has been fairly easy for

us - thank god. Let us know how the fitting goes!

Donna and Xavier DOCband 7/25

--- In Plagiocephaly , " kdaekept " <kim.daeke@r...>

wrote:

> Hi everyone! My son, Gus (7 mos), is getting the DOC Band Aug.

19.

> I have read some great info out there about adjusting to the band,

> but I am still very worried about the sleep thing. My first

question

> is this--do the kids have to change their sleep positions after

they

> are banded? Gus will ONLY sleep on his back, despite our efforts

to

> get him on his side. I'm afraid the band will really disrupt his

> sleep (which isn't that great to begin with). My other question is

> with respect to how long every day to leave on the band. I know

the

> protocol says 23 hours, but there seems to be a lot of talk about

> taking it off to clean, when the child gets hot, etc. I live in NC

> and it is HOT right now. Not to mention an upcoming vacation at

the

> beach.

>

> I really appreciate all the info on this group site. Plagio is

> really a fairly " new " thing--I am a PT (but don't work with kids)

and

> I never even heard of it until my son had it. I am thinking about

> sending info to some of our professional mags and also getting the

> word out at the peds office and birth center. I am lucky--my ped

was

> awesome and suggested the CT consult at the same visit we were

asking

> about the " flat head " .

August 11, 2003

Hi---Just wanted to respond to the sleep question. My son got a STARband a few weeks ago. Sleeping was a little rocky at first. However, it took about 3-4 nights to get completely better. What would happen is that he would wake up after about 40 minutes and cry. I would have to go in and give him his binky. On the first night, this went on several times during the night until I took off the band at midnight. The second night was better. The same sort of thing happened but we made it until about 3 am before I took the band off. The third night was about 5:30 am and then on night four, HE MADE IT ALL THE WAY. Don't be surprised if it takes a few days. My orthotist felt this was pretty normal for some babies. is currently 7 mos old. Good luck!!!

August 14, 2003

MY SON WAS ALSO 7 MON. WHEN HE RECEIVED HIS BAND. HE TOO LIKED TO ONLY SLEEP

ON HIS BACK. HE WAS TESTED AND HAS TORT. ON BOTH SIDES OF HIS NECK WHICH MADE

IT VERY HARD FOR HIS TO ROLL HIS HEAD FROM SIDE TO SIDE, PLUS HAVING SUCH A

FLAT BACK OF HIS HEAD HE COULD NOT GET OVER THE RIDGES ON BOTH SIDES. NOW WITH

THE HELMET HE ROLLS HIS HEAD, SLEEPS GOOD( FROM THE VERY FIRST TIME ON) AND

HIS TORT IS ALMOST GONE. HE STILL HAS PT AND LOVES IT. BEST OF LUCK

MELISSA MOM OF AUSTIN 9 MON (N.I.C BAND 7-24) RACHEL 5

May 26, 2006

The protocol includes dietary restrictions (no dairy, no whole grains,

among others; avoiding foods that the child is systemically allergic to

as determined by blood assay (NOT a typical skin sensitivity test),

evaluating the immune system status through specific bloodwork,

antivirals as appropriate (based on immune test results), antifungals as

deemed appropriate. This is designed to " cool down " a hyper-reactive

immune system which is hypothesized to be producing cytokines, which are

interfering with brain function/brain development. SSRIs to help

improve overall brain bloodflow patterns. That is a very quick summary,

there is so much more to it than that.

Chelation is seen to somehow cause a less positive response to the

protocol (there is a recent thread on this subtopic).

I know the .net site is a bit out of date but the actual

Hypothesis statement can be found there and is a interesting read.

Sandy

codychaser wrote:

> Hi im reading the posts and getting more confused about the group and

> whould someone please clarify the protocal to me. What does it exactly

> consist of. We already do alot of other things along with valtrex,

> nasal b-12, LDN, and chelate. I have heard alot of you say that

> chelation is not a part of this so we can leave that out unless there

> is something about the protocal that i need to know why its important

> to not chelate with the protocol. Thanks for anyone that can help

> me understand what im reading. Kris

>

> Responsibility for the content of this message lies strictly with

> the original author(s), and is not necessarily endorsed by or the

> opinion of the Research Institute and/or the Parent Coalition.

>

May 26, 2006

> > Hi im reading the posts and getting more confused about the group

and

> > whould someone please clarify the protocal to me. What does it

exactly

> > consist of. We already do alot of other things along with

valtrex,

> > nasal b-12, LDN, and chelate. I have heard alot of you say that

> > chelation is not a part of this so we can leave that out unless

there

> > is something about the protocal that i need to know why its

important

> > to not chelate with the protocol. Thanks for anyone that

can help

> > me understand what im reading. Kris

> >

> > Responsibility for the content of this message lies strictly with

> > the original author(s), and is not necessarily endorsed by or the

> > opinion of the Research Institute and/or the Parent

Coalition.

> >

December 17, 2006

Welcome, Meg!

In addition to pain, do you have swelling in any of your joints? Which ones?

When you say your labs were negative, I'm assuming you mean your sed rate

and/or CRP were normal, too.

Did you have any imaging of your hands or feet done (x-rays, MRIs,

ultrasound)?

Is there a history of RA or any other rheumatic disease in your family?

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] New With Questions

> Hi.

>

> I am 40 years old and am diagnosed officially with " undifferentiated

> polyarthritis. " My rheumatologist said I do not have classic RA,

> but " it's close. " Also, all of my bloodwork including rheumatoid

> factor and anti-ccp has been negative so far.

>

> I started having pain in my joints about four months ago, first

> jumping around from place to place, and now steady in my hands,

> wrists, feet, ankles, knees and elbows. I do not experience

> significant morning stiffness, which is why he's not diagnosing RA.

>

> My doctor is basically giving me a choice of taking Plaquenil or

> methotrexate (what a fun choice!). I'm tempted to try the

> Plaquenil, since it is milder, but I'm afraid of taking it for the

> necessary six months and then finding out it isn't working. But I'm

> scared of taking methotrexate, and will miss having my margarita at

> Chillis on Friday nights!

>

> Two questions:

>

> Did any of you have mild RA symptoms for many months, and then

> progress to a more classic, severe RA?

>

> Have any of you with milder RA had significant relief of your

> symptoms from Plaquenil?

>

> Thanks, and I look forward to being a part of this group.

>

> Meg in PA

December 17, 2006

At 08:48 AM 12/17/2006, you wrote:

>hi, Meg

this is just my own experience <G> but, at age 36, I developed

symptoms just like yours---travelling joint pain for months that seemed

to settle in my hands, wrists, knees and elbows.....but, not RA.....

I was also scared of the meds suggested...and decided to wait and see..

and continue to see the rheumatologist...I did not want to take long

term meds unnecessarily....and also worried that if I took say Plaquenil

and saw improvement three months later..HOW to tell if it is the

drug....OR just natural improvement ? ?

So, I waited....had a few cortisone injections in my knees and in one

elbow.....and waited.....took small amounts of motrin....and kept

walking and keeping active, eating healthy and NOTHING new

developed....and after approximately nine months....all my joint pain

and swelling

disappeared except one sore elbow ! ! ! That was 11 years ago, and

except for the one elbow---I have had NO problems until recently after

a knee injury some of the lingering swelling may or may not be

arthritis related....BUT, I could have been taking scary meds for ELEVEN YEARS

for nothing......if eventually, I need medication at some

point..well, that is OK, but, I avoided 11 years of side effects by

finding a physician willing to work with me and allow me to wait and

watch and since my symptoms did not " fit " a diagnostic box .... and

let nature try to work also

Just my own story...but, I thought I would share since our situations

and symptoms sound so similar

best to you,

>I am 40 years old and am diagnosed officially with " undifferentiated

>polyarthritis. " My rheumatologist said I do not have classic RA,

>but " it's close. " Also, all of my bloodwork including rheumatoid

>factor and anti-ccp has been negative so far.

>

>I started having pain in my joints about four months ago, first

>jumping around from place to place, and now steady in my hands,

>wrists, feet, ankles, knees and elbows. I do not experience

>significant morning stiffness, which is why he's not diagnosing RA.

>

>My doctor is basically giving me a choice of taking Plaquenil or

>methotrexate (what a fun choice!). I'm tempted to try the

>Plaquenil, since it is milder, but I'm afraid of taking it for the

>necessary six months and then finding out it isn't working. But I'm

>scared of taking methotrexate,

>Did any of you have mild RA symptoms for many months, and then

>progress to a more classic, severe RA?

December 17, 2006

Thanks, .

I certainly hope I'm as lucky as you have been. I am going to get a

second opinion next Saturday, and will ask him to consider a " wait

and see " approach.

Meg

>

> >hi, Meg

> this is just my own experience <G> but, at age 36, I developed

> symptoms just like yours---travelling joint pain for months that

seemed

> to settle in my hands, wrists, knees and elbows.....but, not

RA.....

> I was also scared of the meds suggested...and decided to wait and

see..

> and continue to see the rheumatologist...I did not want to take

long

> term meds unnecessarily....and also worried that if I took say

Plaquenil

> and saw improvement three months later..HOW to tell if it is the

> drug....OR just natural improvement ? ?

>

> So, I waited....had a few cortisone injections in my knees and in

one

> elbow.....and waited.....took small amounts of motrin....and kept

> walking and keeping active, eating healthy and NOTHING new

> developed....and after approximately nine months....all my joint

pain

> and swelling

> disappeared except one sore elbow ! ! ! That was 11 years ago, and

> except for the one elbow---I have had NO problems until recently

after

> a knee injury some of the lingering swelling may or may not be

> arthritis related....BUT, I could have been taking scary meds for

ELEVEN YEARS

> for nothing......if eventually, I need medication at some

> point..well, that is OK, but, I avoided 11 years of side effects by

> finding a physician willing to work with me and allow me to wait

and

> watch and since my symptoms did not " fit " a diagnostic box .... and

> let nature try to work also

>

> Just my own story...but, I thought I would share since our

situations

> and symptoms sound so similar

>

> best to you,

>

> >I am 40 years old and am diagnosed officially

with " undifferentiated

> >polyarthritis. " My rheumatologist said I do not have classic RA,

> >but " it's close. " Also, all of my bloodwork including rheumatoid

> >factor and anti-ccp has been negative so far.

> >

> >I started having pain in my joints about four months ago, first

> >jumping around from place to place, and now steady in my hands,

> >wrists, feet, ankles, knees and elbows. I do not experience

> >significant morning stiffness, which is why he's not diagnosing RA.

> >

> >My doctor is basically giving me a choice of taking Plaquenil or

> >methotrexate (what a fun choice!). I'm tempted to try the

> >Plaquenil, since it is milder, but I'm afraid of taking it for the

> >necessary six months and then finding out it isn't working. But I'm

> >scared of taking methotrexate,

>

> >Did any of you have mild RA symptoms for many months, and then

> >progress to a more classic, severe RA?

>

December 17, 2006

I cannot stress enough the importance of getting a

second opinion and questioning everything. Hope all

goes well!

--- cubreportr <cubreportr@...> wrote:

> Thanks, .

>

> I certainly hope I'm as lucky as you have been. I

> am going to get a

> second opinion next Saturday, and will ask him to

> consider a " wait

> and see " approach.

>

> Meg

>

> >

> > >hi, Meg

> > this is just my own experience <G> but, at age 36,

> I developed

> > symptoms just like yours---travelling joint pain

> for months that

> seemed

> > to settle in my hands, wrists, knees and

> elbows.....but, not

> RA.....

> > I was also scared of the meds suggested...and

> decided to wait and

> see..

> > and continue to see the rheumatologist...I did not

> want to take

> long

> > term meds unnecessarily....and also worried that

> if I took say

> Plaquenil

> > and saw improvement three months later..HOW to

> tell if it is the

> > drug....OR just natural improvement ? ?

> >

> > So, I waited....had a few cortisone injections in

> my knees and in

> one

> > elbow.....and waited.....took small amounts of

> motrin....and kept

> > walking and keeping active, eating healthy and

> NOTHING new

> > developed....and after approximately nine

> months....all my joint

> pain

> > and swelling

> > disappeared except one sore elbow ! ! ! That was

> 11 years ago, and

> > except for the one elbow---I have had NO problems

> until recently

> after

> > a knee injury some of the lingering swelling may

> or may not be

> > arthritis related....BUT, I could have been taking

> scary meds for

> ELEVEN YEARS

> > for nothing......if eventually, I need medication

> at some

> > point..well, that is OK, but, I avoided 11 years

> of side effects by

> > finding a physician willing to work with me and

> allow me to wait

> and

> > watch and since my symptoms did not " fit " a

> diagnostic box .... and

> > let nature try to work also

> >

> > Just my own story...but, I thought I would share

> since our

> situations

> > and symptoms sound so similar

> >

> > best to you,

> >

> > >I am 40 years old and am diagnosed officially

> with " undifferentiated

> > >polyarthritis. " My rheumatologist said I do not

> have classic RA,

> > >but " it's close. " Also, all of my bloodwork

> including rheumatoid

> > >factor and anti-ccp has been negative so far.

> > >

> > >I started having pain in my joints about four

> months ago, first

> > >jumping around from place to place, and now

> steady in my hands,

> > >wrists, feet, ankles, knees and elbows. I do not

> experience

> > >significant morning stiffness, which is why he's

> not diagnosing RA.

> > >

> > >My doctor is basically giving me a choice of

> taking Plaquenil or

> > >methotrexate (what a fun choice!). I'm tempted to

> try the

> > >Plaquenil, since it is milder, but I'm afraid of

> taking it for the

> > >necessary six months and then finding out it

> isn't working. But I'm

> > >scared of taking methotrexate,

> >

> > >Did any of you have mild RA symptoms for many

> months, and then

> > >progress to a more classic, severe RA?

> >

> > [Non-text portions of this message have been

> removed]

> >

>

December 17, 2006

I have a family friend with RA, who has had it beautifully

controlled with Plaquenil for years. I'd definitely give that a try

first. It didn't work for me, but I don't regret trying!

--- In , " cubreportr " <cubreportr@...>

wrote:

>

> Hi.

>

> I am 40 years old and am diagnosed officially

with " undifferentiated

> polyarthritis. " My rheumatologist said I do not have classic RA,

> but " it's close. " Also, all of my bloodwork including rheumatoid

> factor and anti-ccp has been negative so far.

>

> I started having pain in my joints about four months ago, first

> jumping around from place to place, and now steady in my hands,

> wrists, feet, ankles, knees and elbows. I do not experience

> significant morning stiffness, which is why he's not diagnosing RA.

>

> My doctor is basically giving me a choice of taking Plaquenil or

> methotrexate (what a fun choice!). I'm tempted to try the

> Plaquenil, since it is milder, but I'm afraid of taking it for the

> necessary six months and then finding out it isn't working. But

I'm

> scared of taking methotrexate, and will miss having my margarita

at

> Chillis on Friday nights!

>

> Two questions:

>

> Did any of you have mild RA symptoms for many months, and then

> progress to a more classic, severe RA?

>

> Have any of you with milder RA had significant relief of your

> symptoms from Plaquenil?

>

> Thanks, and I look forward to being a part of this group.

>

> Meg in PA

>

December 17, 2006

I have a family friend with RA, who has had it beautifully

controlled with Plaquenil for years. I'd definitely give that a try

first. It didn't work for me, but I don't regret trying!

--- In , " cubreportr " <cubreportr@...>

wrote:

>

> Hi.

>

> I am 40 years old and am diagnosed officially

with " undifferentiated

> polyarthritis. " My rheumatologist said I do not have classic RA,

> but " it's close. " Also, all of my bloodwork including rheumatoid

> factor and anti-ccp has been negative so far.

>

> I started having pain in my joints about four months ago, first

> jumping around from place to place, and now steady in my hands,

> wrists, feet, ankles, knees and elbows. I do not experience

> significant morning stiffness, which is why he's not diagnosing RA.

>

> My doctor is basically giving me a choice of taking Plaquenil or

> methotrexate (what a fun choice!). I'm tempted to try the

> Plaquenil, since it is milder, but I'm afraid of taking it for the

> necessary six months and then finding out it isn't working. But

I'm

> scared of taking methotrexate, and will miss having my margarita

at

> Chillis on Friday nights!

>

> Two questions:

>

> Did any of you have mild RA symptoms for many months, and then

> progress to a more classic, severe RA?

>

> Have any of you with milder RA had significant relief of your

> symptoms from Plaquenil?

>

> Thanks, and I look forward to being a part of this group.

>

> Meg in PA

>

December 17, 2006

Hello:

I too started with mild symptoms, but did test positive for the RA factor in the

early years. I started out with a comnbo of NSAIDs and Plaquenil. I

experienced great relief and thought all was going to be manageble. Then when I

went for my first 6 month eye exam, I began to lose my perifrial vision and had

to stop the Plaquenil. Now 9 years later I would have rather endured tunnel

vision then experienced all the rest. The bigger drugs have lousy side effect,

from septsis to heart disease. The reality is that all the drugs have side

effects and all we, you, can do is weigh the risks. I am 43 and not done

fighting this bastard...if for no reason than my two daughters that also have

chronic immune diseases.

Good Luck and stay Positive--

Debbie

cubreportr <cubreportr@...> wrote: Hi.

I am 40 years old and am diagnosed officially with " undifferentiated

polyarthritis. " My rheumatologist said I do not have classic RA,

but " it's close. " Also, all of my bloodwork including rheumatoid

factor and anti-ccp has been negative so far.

I started having pain in my joints about four months ago, first

jumping around from place to place, and now steady in my hands,

wrists, feet, ankles, knees and elbows. I do not experience

significant morning stiffness, which is why he's not diagnosing RA.

My doctor is basically giving me a choice of taking Plaquenil or

methotrexate (what a fun choice!). I'm tempted to try the

Plaquenil, since it is milder, but I'm afraid of taking it for the

necessary six months and then finding out it isn't working. But I'm

scared of taking methotrexate, and will miss having my margarita at

Chillis on Friday nights!

Two questions:

Did any of you have mild RA symptoms for many months, and then

progress to a more classic, severe RA?

Have any of you with milder RA had significant relief of your

symptoms from Plaquenil?

Thanks, and I look forward to being a part of this group.

Meg in PA

December 18, 2006

Yes, all the RA drugs can have side effects, some significant. But

I think it's also important to remember that RA, itself, has

horrible " side effects " if it isn't controlled. So far, all the

studies that has posted seem to say that life expectancy is

increased for those with RA who are on DMARDS of one sort or

another.

Obviously, it's worth a second opinion if it's not clear that a

person really has RA. But it seems pretty clear from the research

that at least from a statistical standpoint, early, aggressive

treatment has the best outcome for those who do have RA.

Hi.

>

> I am 40 years old and am diagnosed officially

with " undifferentiated

> polyarthritis. " My rheumatologist said I do not have classic RA,

> but " it's close. " Also, all of my bloodwork including rheumatoid

> factor and anti-ccp has been negative so far.

>

> I started having pain in my joints about four months ago, first

> jumping around from place to place, and now steady in my hands,

> wrists, feet, ankles, knees and elbows. I do not experience

> significant morning stiffness, which is why he's not diagnosing RA.

>

> My doctor is basically giving me a choice of taking Plaquenil or

> methotrexate (what a fun choice!). I'm tempted to try the

> Plaquenil, since it is milder, but I'm afraid of taking it for the

> necessary six months and then finding out it isn't working. But

I'm

> scared of taking methotrexate, and will miss having my margarita

at

> Chillis on Friday nights!

>

> Two questions:

>

> Did any of you have mild RA symptoms for many months, and then

> progress to a more classic, severe RA?

>

> Have any of you with milder RA had significant relief of your

> symptoms from Plaquenil?

>

> Thanks, and I look forward to being a part of this group.

>

> Meg in PA

>

December 19, 2006

This is a very important point, . Untreated RA can have very serious

consequences.

In addition to DMARDs leading to improved outcomes, including those related

to mortality, the latest research is also pointing to the possibility that,

for some people with RA, early, aggressive treatment can lead to remission,

even a drug-free (!) remission.

The key is EARLY treatment. If one waits too long, theoretically at least, a

" window of opportunity " may pass.

Here are some studies related to this topic:

*******************************************************

Infliximab + methotrexate: the BeST induction therapy for early RA?

Inpharma Weekly. (1547):17, July 22, 2006.

Crofskey, S

Abstract:

According to 3-year data from the award-winning BeST study, presented at

the 2006 Annual European Congress of Rheumatology (EULAR) [Amsterdam, The

Netherlands; June 2006], infliximab [Remicade] plus methotrexate is an

effective remission induction therapy in patients with early rheumatoid

arthritis (RA). After two years, 56% of patients who received induction

therapy with infliximab plus methotrexate had achieved a persistent low

disease activity, defined as a Disease Activity Score (DAS) of <= 2.4 for

more than 6 months, and discontinued infliximab therapy. At the 3-year

analysis, 53% of patients had successfully discontinued infliximab therapy

and maintained a persistent low disease activity, including 14% of patients

who had discontinued both infliximab and methotrexate and remained in

clinical remission.

http://inpharma.adisonline.com/pt/re/inp/abstract.00128413-200615470-00047.htm;j\

sessionid=FLwVdstvxN9QV9CFsJ6jXvdYtx555rHs4khT5LL9j7L4n0YfsXtS!-1770056926!-9498\

56145!8091!-1

*******************************************************

Clin Exp Rheumatol. 2006 Nov-Dec;24(6 Suppl 43):S033-6. Links

Can remission be maintained with or without further drug therapy in

rheumatoid arthritis?

Academic Unit Section of Musculoskeletal Disease, Chapel Allerton

Hospital, Leeds, West Yorkshire, UK.

Remission is now the accepted goal of management in rheumatoid arthritis

(RA). This article highlights the controversies surrounding the definition

of remission and reviews the potential of current treatment options to

achieve remission. Defining " true " remission can be difficult based on

current criteria, which do not consider structural and physical function.

Nonetheless, considerable advances in recent years have made the concept

of remission a realistic goal.

In early RA, substantial and largely irreversible radiographic damage is

seen in 60% of patients within the first 2 years of diagnosis. Early

therapeutic intervention would ideally lead to reduction in long-term

disability in RA and likelihood of inducing and maintaining remission.

Long-term maintenance therapy with disease-modifying antirheumatic

drugs (DMARDs) has been shown to be effective in preventing flares of

disease. Stopping therapy for short periods does not necessarily lead to

flares, but the effect on long-term radiographic damage and potential to

achieve similar levels of disease control following reinstatement of

therapy is not established.

Early use of tumour necrosis factor (TNF)-antagonist therapy (e.g.

infliximab) has been shown to lead to significant improvement in disease

activity measures (clinical and radiologic outcomes) when compared to

monotherapy or combination DMARD and corticosteroid therapies.

Response was shown to be sustained in 70% of patients receiving

TNF-blocking therapy 1 year after stopping treatment. This suggests the

significant role of TNF-blocking therapy in enabling sustainable remission

without need for long-term adminstrations, which has important implications

for favourable health economics. At present, little published evidence

exists on the effects of withdrawal of TNF-blocking therapy in patients with

established RA in remission.

In conclusion, evidence indicates that remission is a realistic goal, but

more evidence is required to establish optimal treatment strategies and

define criteria for remission that include imaging and immunological as well

as clinical assessment of the disease state.

PMID: 17083760

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed & cmd=Retrieve & dopt=Abstra\

ctPlus & list_uids=17083760

*******************************************************

Arthritis Rheum. 2005 Jan;52(1):27-35. Links

Very early treatment with infliximab in addition to methotrexate in early,

poor-prognosis rheumatoid arthritis reduces magnetic resonance imaging

evidence of synovitis and damage, with sustained benefit after infliximab

withdrawal: results from a twelve-month randomized, double-blind,

placebo-controlled trial.

Academic Unit of Musculoskeletal Disease, First Floor, Leeds General

Infirmary, Great Street, Leeds LS1 3EX, UK.

OBJECTIVE: Anti-tumor necrosis factor alpha agents are among the most

effective therapies for rheumatoid arthritis (RA). However, their optimal

use is yet to be determined. This 12-month double-blind study attempted

remission induction using standard therapy with or without infliximab in

patients with early, poor-prognosis RA. The primary end point was

synovitis (measured by magnetic resonance imaging [MRI]). Clinical

observations continued to 24 months.

METHODS: All patients had fewer than 12 months of symptoms. Assessments

included full metrologic evaluation, laboratory tests, radiographs,

functional evaluation using the Health Assessment Questionnaire (HAQ), and

quality of life measurement using the RA Quality of Life (RAQoL)

questionnaire. MRI was performed at 0, 4, 14, and 54 weeks; MR images were

scored blindly. Patients received methotrexate (MTX) and were randomized to

receive either infliximab or placebo for 12 months.

RESULTS: Twenty patients were recruited (mean age 52 years, mean symptom

duration 6 months, mean C-reactive protein level 42 mg/liter, and 65%

rheumatoid factor positive).

At 1 year, all MRI scores were significantly better, with no new erosions

in the infliximab plus MTX group; a greater percentage of infliximab plus

MTX-treated patients fulfilled the American College of Rheumatology (ACR)

50% and 70% improvement criteria (78% versus 40% in the placebo plus MTX

group and 67% versus 30%, respectively) and had a greater functional

benefit (P < 0.05 for all comparisons).

Importantly, at 1 year after stopping induction therapy, response was

sustained in 70% of the patients in the infliximab plus MTX group, with a

median Disease Activity Score in 28 joints (DAS28) of 2.05 (remission

range). At 2 years, there were no significant between-group differences in

the DAS28, ACR response, or radiographic scores, but differences in the HAQ

and RAQoL scores were maintained (P < 0.05).

CONCLUSION: Remission induction with infliximab plus MTX provided a

significant reduction in MRI evidence of synovitis and erosions at 1 year.

At 2 years, functional and quality of life benefits were sustained,

despite withdrawal of infliximab therapy. These data may have significant

implications for the optimal use of expensive biologic therapies.

PMID: 15641102

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?itool=abstractplus & db=pubmed & cmd=R\

etrieve & dopt=abstractplus & list_uids=15641102

*******************************************************

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Re: New With Questions

> Yes, all the RA drugs can have side effects, some significant. But

> I think it's also important to remember that RA, itself, has

> horrible " side effects " if it isn't controlled. So far, all the

> studies that has posted seem to say that life expectancy is

> increased for those with RA who are on DMARDS of one sort or

> another.

>

> Obviously, it's worth a second opinion if it's not clear that a

> person really has RA. But it seems pretty clear from the research

> that at least from a statistical standpoint, early, aggressive

> treatment has the best outcome for those who do have RA.

>

> Hi.

>>

>> I am 40 years old and am diagnosed officially

> with " undifferentiated

>> polyarthritis. " My rheumatologist said I do not have classic RA,

>> but " it's close. " Also, all of my bloodwork including rheumatoid

>> factor and anti-ccp has been negative so far.

>>

>> I started having pain in my joints about four months ago, first

>> jumping around from place to place, and now steady in my hands,

>> wrists, feet, ankles, knees and elbows. I do not experience

>> significant morning stiffness, which is why he's not diagnosing RA.

>>

>> My doctor is basically giving me a choice of taking Plaquenil or

>> methotrexate (what a fun choice!). I'm tempted to try the

>> Plaquenil, since it is milder, but I'm afraid of taking it for the

>> necessary six months and then finding out it isn't working. But

> I'm

>> scared of taking methotrexate, and will miss having my margarita

> at

>> Chillis on Friday nights!

>>

>> Two questions:

>>

>> Did any of you have mild RA symptoms for many months, and then

>> progress to a more classic, severe RA?

>>

>> Have any of you with milder RA had significant relief of your

>> symptoms from Plaquenil?

>>

>> Thanks, and I look forward to being a part of this group.

>>

>> Meg in PA

October 3, 2007

www.neuroimmunedr.com and www.nids.net Yes, when we say Dr. G we are

talking about Dr. Goldberg.

Cheryl

On Sep 23, 2007, at 8:45 AM, pamp81 wrote:

> Hello all,

> I have stumbled onto this group and find it fascintating. A quick

> bio--

> we have various conditons within our family--one son with severe

> sensory integration issues, A.D.D., right brain learning

> disabilities, anxiety and some OCD tendencies; a daughter who came

> down with severe CFIDS at age 11 (yes,age 11) who also has polycystic

> ovarian syndrome and anxiety; and I have a " lupus like " illness, much

> like Sjogren's or CFIDS, and A.D.D., and polycystic ovarian

> syndrome. I took my kids and I to a DAN doctor, and we went GFCF,

> organic, chemical and additive diet, with personalized supplements and

> allergy treatment. All of this has helped immensely, but we are still

> dealing with some things--specifically, I am looking for answers for

> my son's sensory problems and the OCD. Is the protocol listed

> somewhere, and when you say " Dr. G " is this Dr. Goldberg?

> Thanks so much!

> Pam in MO

>

October 4, 2007

Thanks Cheryl. I have looked over the site, and plan to some more. Most of it

is similar to what we are doing. We eliminate a few additional foods (soy comes

to mind), but it is similar.

Pam

Re: New with questions