/

[Guest guest]

,

LOL, Weight I think was one of the biggies that messed me up! I

can't seem to keep weight on that well anyways. The docs would love

to see me put on weight before treatment. Honest, I have from size 0

to 5 put away, according to what my size goes to from day to day,

month to month! LOL Maybe we could trade some of that weight??

I did reg Interferon twice, and tried old combo 3 times a week, but

sides were too severe! Now waiting on trial study and interview.

Trying to keep up with what people are feeling and doing. Have

many ??? before I try again. As each time my viral load went up

after treatment. And I am Genotype 3A and showed non-detect on each

treatment until taken off. May be rare case, but I hope works for

you and yes, I am very interested in what happens. So keep us

posted. Thank you!..........Dana in PA

> In a message dated 12/5/02 5:49:33 AM Pacific Standard Time,

> spiria_spirit@y... writes:

Welcome to the group! I am Dana in PA. Let me know how it goes with

the PegIntron Combo! I may be trying that soon. Have done treatment

3 times and failed, have not tried this one yet, but listening to

others and how it goes, so I wish the best for you! Lots of water is

one of the things I know for sure and eat something even if you are

not hungry! I went down to 97LBS and they took me off treatment.

Sides and Treatment at that time were worse than the HepC.

Thanks for the welcome Dana. Wow three treatments that did not

wwork. May I ask what they were? While I hope I do not go down to

97lbs, I wouldn't mind losing 10-15lbs LOL. I will try to share what

happens if you are really interested.

Hugs,

[Guest guest]

, speaking of teeth, my dentist had me purchase a little water pik or something like that....it is where a jet of water brushes between the teeth as well as the gums. My last dental check was one of the best. The visit was VERY short! My teeth have great ridges from toothbrush abrasion. All I know is that my gums are MUCH healthier since using this machine. I spent $120 and purchased it from his office, but believe me...it has been one of the most well spent amount of money in a long time!

Also, to answer the last post...indeed, the doctor did check the amalyse levels. So far, the pancreas is doing OK....just that with the last biopsy being so good but the enzymes increasing, she is thinking that it could be another liver problem. But before jumping to dx, she wants to follow closely the labs, and then possibly do another biopsy soon. But that is last on her list.

Debby

Re: [ ] Re: gums, receding teeth, and bleeding

,

thanks for the advice. I do agree that bleeding and receding gums warrant a trip to the dentist. My daughter has JRA and just before she went away to college, her dentist was concerned that her gums were receding too much for someone her age who obviously was pretty dilligent about her dental care. He told us she was already showing some bone loss. He was concerned that it might be related to her JRA. He wanted to some kind of new laser deep root cleaning to the tune of about $3000. We decided to go for a second opinion. She went to a peridontist and from the exact same x-rays the dentist had based his advice on, the peridontist said she absolutely did not have ANY bone loss. The peridontist said she did have a few pockets in her gums that were a little deeper than what he would like, but he thought it could be cleared up with a series of a few deeper cleanings than the average six month cleaning. She had her teeth cleaned either two or three times by the peridontist. She also used some type of prescription mouthwash for several months and started doing better at flossing her teeth. He also told her that one of her problems was that she was brushing too hard. He had her switch to a soft toothbrush and told her not to be so rough in brushing. Things improved drastically for her and her last several dental cleanings and check ups have shown that her gums are back to where they should be for her age.

Thankfully, my teeth and gums so far have been incredibly healthy. Hopefully, they will stay that way!

W

[Guest guest]

Ahhh, ! I'm sorry you got such a crummy mapping! Here's hoping the

19th brings much better luck!!

- Please don't poop as Cochlear says there will be a trade program for

your bwp eventually! LOL

Jackie

[Guest guest]

Jackie,

Ahhh yes, the 19th will be better. Which is now next week. Yuh

know, I can't complain. My CI center is right here in town, a half

hour or so by public transit.

*---* *---* *---* *---* *---*

Nostalgia isn't what it used to be.

& Gimlet (Guide Dawggie)

Portland, Oregon

rlclark77@...

http://home.attbi.com/~rlclark77/

Sig by Kookie Jar 6.3 (http://go.to/generalfrenetics/)

[Guest guest]

Jan,

Glad you enjoyed the story. My poor daughter now admits that I was right and that they should have waited until they had more normal schedules to get a dog. Ya know - married, through with college, and living together so the poor pup doesn't have to go back and forth between two places so much. I told her now that she has admitted I was right, she has to listen to everything I tell her for the rest of her life. She says she'll listen, but then will still do what she wants. Actually, I do have to admit that she has grown up so much during her 3 years in college. She seeks my advice on a regular basis and actually follows my advice on occasion!

Hang in there. Puppies usually get better eventually!

W

[ ] /

Hello .....I love salmon but recently read about concerns of farmed salmon in that they're given hormones & other additives so they mature, ready for harvesting, in half their natural growing span. Here, Health Dept are looking into bringing out 'safe'

guidelines for human consumption. Also....I find the salmon very oily and it makes me ill for days afterwards. Youve got "glo in the dark" palms as well? Ive had them this way a long time now....only time the red disappeared was after a complete blood

transfusion, which lasted 3/4 months. I still loathe comments about them from unknowing people.

....loved you doggy poo story. I ended up yesterday saying I was packing my bags, its either me or the dog (as its my

daughter's), so if I go, given the choice & the dog wins, I may have to doss down in the dogbox as I havent anywhere else to go !

Love Jan

[Guest guest]

In a message dated 4/30/2004 5:37:42 PM Pacific Standard Time,

lisak70@... writes:

the list mentioned something called " 3G. " Is

this another implant brand or it is a program that can be added to an

implant?

It is a BTE processor used by those who has cochlear implant (N22 or N24C).

Lee

[Guest guest]

Muriel and list,

It's great to see so many Milwaukeeans on the list!! <smile> I'll be a

Milwaukee transplant soon myself. I plan on moving down to Arizona after

graduation.

I'm learning so much from the list! Thanks to everyone who has answered my

questions so far. <smile> I'm getting more and nore excited about the

prospect of getting a CI. I feel so welcomed on the list. Thank you all!!

P.S. You and several others on the list mentioned something called " 3G. " Is

this another implant brand or it is a program that can be added to an

implant?

[Guest guest]

It's " behind the ear " looks like a hearing aid. Cordless.

Pilar

Kozlik <lisak70@...> wrote:

Muriel and list,

It's great to see so many Milwaukeeans on the list!! <smile> I'll be a

Milwaukee transplant soon myself. I plan on moving down to Arizona after

graduation.

I'm learning so much from the list! Thanks to everyone who has answered my

questions so far. <smile> I'm getting more and nore excited about the

prospect of getting a CI. I feel so welcomed on the list. Thank you all!!

P.S. You and several others on the list mentioned something called " 3G. " Is

this another implant brand or it is a program that can be added to an

implant?

[Guest guest]

In a message dated 9/15/2004 7:59:09 PM Pacific Daylight Time,

TazLovesTweety99@... writes:

Im currently awaiting word when I ll be evaluated at the University of

Washington.

well well well,,, hi stranger! it is good news to hear, that you are being

eval at UW. Keep us posted... i recalled a year ago, you had trouble

getting approval,, hope you get it this time!

Lee

[Guest guest]

In a message dated 9/15/2004 8:58:38 PM Pacific Daylight Time,

brandonpace@... writes:

hey, it could happen when they are teenagers. :-P

or 20 or 30 even 40s..................... parents have funny ways of NOT

knowing when to back off.

Lee

[Guest guest]

Lee... Yeah, I put everything on hold because I was having difficulty with some

things in my personal life, along with a new baby as well. Yes everyone, I had

another baby girl, born June 23, 2004, at 959 pm. Perfectly normal, healthy, no

problems. 3 1/2 weeks EARLY from her due date of July 19th. 36 1/2 weeks

gestational age, doctor thought the baby'll be small and not healthy. but a BIG

surprise, screaming at top of her lungs for a half hour after birth, and when we

saw her she was BIG 8 lb 1 oz 20 inches! for a 36 1/2 week pregnancy!

I got frustrated with the Virginia Mason Hospital, so I am trying the U of WA.

Hope everything progresses well. I am volunteering a lot this year in my two

toddler's classrooms this year, Dana my 4 year old her 2nd year at Headstart,

and my 3 year old son starts this year .

spottedlee@... wrote:

In a message dated 9/15/2004 7:59:09 PM Pacific Daylight Time,

TazLovesTweety99@... writes:

Im currently awaiting word when I ll be evaluated at the University of

Washington.

well well well,,, hi stranger! it is good news to hear, that you are being

eval at UW. Keep us posted... i recalled a year ago, you had trouble

getting approval,, hope you get it this time!

Lee

[Guest guest]

,

Sounds like you are the Number 1 Father of the World! LoL! I have to agree

with that, you sounds like you are the best father your children ever has, and I

hope they will kept you as a best father! :-) however, I would advise you to be

ready if they told you " dad, I don't need you, ok? just relax.. " or " Dad, you

are embrassing me!! " LoL. hey, it could happen when they are teenagers. :-P

Re: /

Lee... Yeah, I put everything on hold because I was having difficulty with

some things in my personal life, along with a new baby as well. Yes everyone, I

had another baby girl, born June 23, 2004, at 959 pm. Perfectly normal, healthy,

no problems. 3 1/2 weeks EARLY from her due date of July 19th. 36 1/2 weeks

gestational age, doctor thought the baby'll be small and not healthy. but a BIG

surprise, screaming at top of her lungs for a half hour after birth, and when we

saw her she was BIG 8 lb 1 oz 20 inches! for a 36 1/2 week pregnancy!

I got frustrated with the Virginia Mason Hospital, so I am trying the U of WA.

Hope everything progresses well. I am volunteering a lot this year in my two

toddler's classrooms this year, Dana my 4 year old her 2nd year at Headstart,

and my 3 year old son starts this year .

spottedlee@... wrote:

In a message dated 9/15/2004 7:59:09 PM Pacific Daylight Time,

TazLovesTweety99@... writes:

Im currently awaiting word when I ll be evaluated at the University of

Washington.

well well well,,, hi stranger! it is good news to hear, that you are being

eval at UW. Keep us posted... i recalled a year ago, you had trouble

getting approval,, hope you get it this time!

Lee

[Guest guest]

- I'm so glad your mom is doing well enough to come home. Hospice is

available on an " at home basis " , and they are an amazing help to all. I'm so

happy you and Mom are able to avail yourselves of their loving care. ~ Your

food list for post surgery sounds terrific! I never would've thought of

flavored applesauce. Perfect! Everything else sounds good, too, but I'm

not

sure you will be thrilled with carbonated sodas the first few days. They

can cause a sore throat to sting. Reach for some juices, instead, for the

first few days. By the end of your first week you will have gained 10 pounds!

LOL Not to worry, your comfort is more important the first few weeks. I'm

counting the days with you and sending good vibes that all is going to go

smoothly. Be sure to ask for good drugs! LOL

- Thanks for the name of the film about the biserk dentist. I've

seen the newer version a few times and, Oh my G-d it is VERY scary! LOL I've

seen Jack Nicholson very young and that was scary, too! LOL

Jackie

[Guest guest]

Hi, ,

You are NOT a whiner! Although, you MAY be weird! That I wouldn't

know, yet! LOL You've just had surgery. Give yourself a break.

<<<Sometimes I have sharp pain, it feels like deep inside my

ear, that comes on fast and leaves just as fast. My skin seems to have a dull

ache. My neck still seems stiff and sometimes when I bite big or yawn, I get a

shooting pain.>>>

I had my surgery on Jan. 26, so it is just a little more than two weeks.

I don't feel achy, but just a few days ago I was so tired that I needed to

sleep the entire day! I forgot my own warning, " you just had surgery! " I'd

resumed my full schedule and had been busy and it just all caught up with me.

As to your other symptoms, I have all of them, too. The dull ache makes it

hard to stay asleep, especially when mine was done on my " sleeping side " . As

always, if any of this is causing you alarm or is really difficult to live with,

do e-mail or call your doctor. It never hurts to report these things and get

reassurance from the professional. Give it a bit more time, and I bet you

forget most of the details. Good luck on hook-up. Remember not to expect

anywhere near perfect hearing, and know that this is a progressive journey,

starting at zero and moving to places only time will tell.

) Jackie

Hi, ,

Soooo glad you got to your audi and have things straightened out.

Having the old map back will give you a new sense of confidence and allow you to

explore the new maps without fear. You won't have to wonder, as much, if your

brain is the culprit, or your map, because you'll have the comfortable one to

fall back on and compare. Be careful not to let it become a " crutch " to give

up on a new map too fast, though I doubt you will do that, but do NOT sit up

nights anymore trying to get the radio vibes! LOL You have plenty of aural

stimulation during the day without exhausting yourself all night, as well. I

hope this puts you back on the road and moving forward instead of back!

<smiles> Jackie

[Guest guest]

Ahhh, ,

I got you all my wonderful report from the Big Apple! LOL And thanks

for the good wishes! I'm afraid the 24 hour " vacation " cost us a small

fortune and I only had my words to bring back to you! Hope it's the thought

that

counts!

- thanks for your good wishes, as well. You were not late. Any day

following the days I had Wed. and Thurs. are on time!

Note how I am answering and together? <hehehe>

<giggling> Jackie

[Guest guest]

Jackie,

Ok ok, I will settle for the report of the big day in the Big Apple.

Did you know.... Oh yes you must know. The New Yawkers want to dump the

Big Apple and go with another name. I wonder if a worm got into the

Apple.....

(has noticed Jackie answering me and in one post....hmmmmm!)

*---* *---* *---* *---* *---*

" Ever wonder if the light goes out when you close the fridge door? Well, yes

it does. "

--The milk

& Gimlet (Guide Dawggie)

Portland, Oregon

N24C 3G 8/2000 Hookup

rlclark77@...

http://home.comcast.net/~rlclark77/

[Guest guest]

I actually did mean 30-40 myotomies. The surgeon I actually had the

referring appointment with had never done any. They were going to

team up. A surgeon doing only 30-40 surgeries teaming up with one

that has no experience at all kind of scares me. I have asked for a

referral to Dr Eubanks at the University of Missouri

Columbia. I have heard he has a lot of experience and is considered

one of the best in the country. I am waiting for the approval of

that referral.

Is there anyone in the midwest that has heard of him?

> Welcome and may I also add my appreciation for your

husband's work

> defending our country.

>

> I think was referring to 30-40 manometries....not

myotomies, . I may be wrong...there are so many posts, I'm

skimming a lot. At any rate, 100 myotomies is a good number....my

surgeon had only done 50, but I was very,v ery impressed with him and

his answers to my 2-page " Achalasia Interrogation " that I opted to

have him do the surgery and so far have been very, very happy with

him. Hope you can find excellent treatment. Cindi in PA

[Guest guest]

can achalasia cause problems in different organs like

the liver?

--- michelleskiles564 <michelleskiles564@...>

wrote:

>

> I actually did mean 30-40 myotomies. The surgeon I

> actually had the

> referring appointment with had never done any. They

> were going to

> team up. A surgeon doing only 30-40 surgeries

> teaming up with one

> that has no experience at all kind of scares me. I

> have asked for a

> referral to Dr Eubanks at the

> University of Missouri

> Columbia. I have heard he has a lot of experience

> and is considered

> one of the best in the country. I am waiting for

> the approval of

> that referral.

>

> Is there anyone in the midwest that has heard of

> him?

>

>

>

>

> > Welcome and may I also add my

> appreciation for your

> husband's work

> > defending our country.

> >

> > I think was referring to 30-40

> manometries....not

> myotomies, . I may be wrong...there are so

> many posts, I'm

> skimming a lot. At any rate, 100 myotomies is a

> good number....my

> surgeon had only done 50, but I was very,v ery

> impressed with him and

> his answers to my 2-page " Achalasia Interrogation "

> that I opted to

> have him do the surgery and so far have been very,

> very happy with

> him. Hope you can find excellent treatment. Cindi

> in PA

>

>

>

>

__________________________________

Celebrate 's 10th Birthday!

Netrospective: 100 Moments of the Web

http://birthday./netrospective/

[Guest guest]

In a message dated 2/27/06 10:01:34 PM Central Standard Time,

thewalkers1989@... writes:

> As a child I went to clinic mostly and it was a teaching hospital (I do

> understand that now but NOT then) the doctors and their " enterage " of 12

> students

> come in and use kids like a " lab rat " I HATED it.

> ,

> I hear you.In June of 2001 was carried into Vanderbilt Childrens

> Hospital.

> He was burning up with fever,he looked like he had been stung and bitten by

> everything possible and horse whiped.From the sholder to the elbow they stuck

> out in a straight line and from the elbow down they were frozen down.His

> arms made an upside down L shape.His knees were contracted so when he layed on

> the exam table he looked like he was sitting in a chair.All these med students

> came in but I will never forget this one girl.When she walked out she looked

> like she was going to faint but not before throwing up.I could tell this was

> not what she had in mind about cute little babies and well check ups.

> was too young to remember.He realy doesn't remember anything at all.I

> hope he doesn't remember the dreaded yellow MTX shots because if his tummy

> can't handle the 5 pills it's back to them.It was a party at our house when we

> threw that last vial in the trash.Unfortunately restarting as pills(7.5mg)

> caused severe Gastritis so when we went back to shots his whole world came

> crumbling down.He was traumatized so we tried pills again along with some

MAJOR

> doses of prescription Zantac 150mg 2x a day at age 5.

> I as mommy prefer the shots.Atleast I know he is absorbing the whole dose

> and it bypasses the liver.

> Thanks for responding.It meant alot, has been so well for so long that

> I guess having active Arthur in his wrists seems like no big deal to

> most.Can't blame them.

> I'll just keep taking my anti depressant and shall overcome.

> Love and hugs

> Becki and 7 systemic

[Guest guest]

In a message dated 6/5/2006 9:24:30 P.M. Eastern Daylight Time,

snooksmama@... writes:

Having the genetic marker doesn't mean you'll have the

disease.

Oh I know that...now. When the rheum had first told me he was going to check

for it, he had told me that. But there's still a part of me that feels

guilty about it regardless. My husband does too in a different way, because his

brother had JRA and now just has arthritis, and his aunt has arthritis so bad

that her hands look like claws, and she's has it since she's been about 9.

She's in her late 70's now. But he feels that maybe he passed something on to

her

too.

But who knows.

We're also awaiting to see if she can have the test to find out if she has

Early Degenerative Joint Destruction, which runs in my moms family. My

brother, who is only 27 was just diagnosed last year with it. My mom has already

had

bones fused in her neck, hips and back because of it and total knee

replacements on both legs.

The dr did tell me that the tests might come back inconclusive because of

her age, but he said it couldn't hurt to try.

But on the bright side of life, hasn't really had any problems

lately. Her knee swelled up on Sunday, but it seems to have gone down quite a

bit

since. My mom, who is a nurse, came up today to check it and said that there

is only a tiny bit of swelling left on the bottom of the kneecap.

She doesn't go back to the dr till the 28th of this month, so...

I'll let ya's know

))

( , 5 ,JRA, AkSp)

[Guest guest]

:

Just wanted to chime in here: you know that there is a large segment of

the population that are HLA B27 positive and do not have ankylosing

spondylitis?? Having the genetic marker doesn't mean you'll have the

disease. My point is, could have inheritied the gene but still

not have gotten the disease. The research isn't there yet to explain why

some get it and some don't.

That being said, my son is adopted, and he is positive for HLA B27 and

has spondy. My mom had RA and I have RA. What a coincidence? Maybe. Makes

me wonder if there is something in our environment that my son and I have

shared the last 17 years that turned on the respective genes we

inherited??

Anyway, I do know that you can't beat yourself up for passing on a gene.

That's obviously easy for me to say, as I never experienced the joy of

pregnancy and childbirth.

But I know that is so glad to have you as her mom.

I wish you peace.

and Rob 17 Spondy

On Mon, 5 Jun 2006 18:57:58 EDT naturesnotionsnj@... writes:

Jo and everyone here,

I feel so deeply for all that you are going through. Thank God, 's

symptoms are nowhere near as advanced as what anyone else has described,

and the

fact that they caught onto it at I guess what are the " beginning stages " .

I

read about the meds your children are on and sit here and wonder, " could

that

eventually be my child? " (Right now is only taking prescription

strength Motrin every 6 hrs), I read about the pain that you describe

from your

children's point of view and through your own eyes, and again, wonder if

is going to end up that way too.

And I beat myself up over it with every post I read. Because I carry the

genetic marker that pre-disposed her to the Anklosing Spondylitis. It

took

almost a week for my husband to convince me that I didn't purposely do

this to

her, after her diagnoses.

I remember breaking down and screaming at him about it's was my fault

that

she could possibly hurt and indure pain for everyday of the rest of her

life?

I remember blaming my Ob/Gyn for not having a test to alert parents-to-be

of

things like this, for not running a simple blood test, etc. How it was

their

fault because this could of been monitored from birth and so on and so

on.

I know how you feel, believe me I do. I know what it's like to have your

3

other children look at you and say, " oh, you're taking out again

today? " and trying to explain to them that they were not " fun trips " and

I didn't

enjoy them and neither did .

I know what it's like to become an obsessive worry-wart and hover over

your

" hurt/sick " child and make them feel like they are the " odd one " because

you're too busy being afraid of all the things that you've read about

and heard

instead of taking everyday at face value.

Sorry for rambling...

Big huggs to all the parents out there!

))

[Guest guest]

-,

im sorry to read that Drea is again, off school, what a struggle she

is having this fall. I really hope things turn around for her AND

SOON!!! she deserves a break....

hugs Helen and (9,systemic)

-- In , " sonia1md " <sonia1md@...> wrote:

>

> Becki,

> sorry that things are going so poorly for ...It does get

> frustrating doesn't it...It feels like this flare that Aundrea has

> had just wont end...She is home sick again today. She has a

> sorethroat and all of her joints hurt. We are trying to stick

with

> increasing the mtx to find a new therapeutic level for her. We

are

> at 20mg subq right now and are at our 3rd week of this dose.

>

> I think you should notify the doctors office of whats going on and

> tell them you will be bumping up his mtx...It takes so long before

> it begins working that is seems like wasted time til your

appt...At

> the appt you can discuss the increased dose. Since he was on a

> higher dose before it seems like a reasonable option to me.

>

> I have missed you around here but I understand how busy life

gets.

> Let us know what happens!

>

> sonia (drea 11 systemic jra/gerd)

>

>

> >

> > Hi everyone,

> > I know I have been quiet and slow since haveing to go back to

> work,sorry....

> > I also know I shouldn't whine or whimper but who else knows

better

> then you

> > gals.

> > The brief morning stiffness that was an awkward run is a major

> limp on the

> > lft ankle.By afternoon-early evening there is a limp and the

ankle

> is turned

> > outward to avoid bending the joint.We have been batteling

> completely controling

> > the rt wrist for around 2 yrs but now it's the lft.

> > is scheduled at Vanderbilt the 29th.I e-mailed

Cincinnati

> and

> > Dr.Lovell will not be back untill the 15th.

> > I'm sick and tired of this. achieved complete remission on

> meds.It was

> > on the final taper off the MTX that he became active again.

> > is currantly only taking 32.5mg of Enbrel 1x a week and

> 12.5mg MTX oral

> > a week.

> > A little over 3 3/4 yrs ago he was on 25mg MTX sub-q,25mg

> Enbrel ,200mg

> > Plaquenil daily,300mg Ibuprofin 3x daily and all the little

things

> to counteract

> > side effects.

> > Not ready to just slam Arthur but atleat max out the oral dose

of

> MTX before

> > going back to the dreaded,yellow shots from hell and an NSAD for

6-

> 8 weeks.

> > Hugs

> > Becki and 8 systemic

> >

> >

> >

> >

[Guest guest]

Thanks Helen for the well wishes. I am sure that she will come out

of this flare eventually... I am thankful that on her good days she

gets to join in and do all the active things that she loves...Its

just the frequency of the bad days that are causing the troubles!

I can't believe that Nick has been of pred for a month. I bet you

wondered if that day would ever come. I am so excited for that

little Nicky Noodle and hoping for a nice big growth spurt to happen

next! :-)

sonia (drea 11 systemic jra/gerd)-

-- In , " hburger64 " <hburger64@...> wrote:

>

> -,

>

> im sorry to read that Drea is again, off school, what a struggle

she

> is having this fall. I really hope things turn around for her AND

> SOON!!! she deserves a break....

>

> hugs Helen and (9,systemic)

>

> -- In , " sonia1md " <sonia1md@> wrote:

> >

> > Becki,

> > sorry that things are going so poorly for ...It does get

> > frustrating doesn't it...It feels like this flare that Aundrea

has

> > had just wont end...She is home sick again today. She has a

> > sorethroat and all of her joints hurt. We are trying to stick

> with

> > increasing the mtx to find a new therapeutic level for her. We

> are

> > at 20mg subq right now and are at our 3rd week of this dose.

> >

> > I think you should notify the doctors office of whats going on

and

> > tell them you will be bumping up his mtx...It takes so long

before

> > it begins working that is seems like wasted time til your

> appt...At

> > the appt you can discuss the increased dose. Since he was on a

> > higher dose before it seems like a reasonable option to me.

> >

> > I have missed you around here but I understand how busy life

> gets.

> > Let us know what happens!

> >

> > sonia (drea 11 systemic jra/gerd)

> >

> >

> > >

> > > Hi everyone,

> > > I know I have been quiet and slow since haveing to go back to

> > work,sorry....

> > > I also know I shouldn't whine or whimper but who else knows

> better

> > then you

> > > gals.

> > > The brief morning stiffness that was an awkward run is a major

> > limp on the

> > > lft ankle.By afternoon-early evening there is a limp and the

> ankle

> > is turned

> > > outward to avoid bending the joint.We have been batteling

> > completely controling

> > > the rt wrist for around 2 yrs but now it's the lft.

> > > is scheduled at Vanderbilt the 29th.I e-mailed

> Cincinnati

> > and

> > > Dr.Lovell will not be back untill the 15th.

> > > I'm sick and tired of this. achieved complete remission

on

> > meds.It was

> > > on the final taper off the MTX that he became active again.

> > > is currantly only taking 32.5mg of Enbrel 1x a week and

> > 12.5mg MTX oral

> > > a week.

> > > A little over 3 3/4 yrs ago he was on 25mg MTX sub-q,25mg

> > Enbrel ,200mg

> > > Plaquenil daily,300mg Ibuprofin 3x daily and all the little

> things

> > to counteract

> > > side effects.

> > > Not ready to just slam Arthur but atleat max out the oral dose

> of

> > MTX before

> > > going back to the dreaded,yellow shots from hell and an NSAD

for

> 6-

> > 8 weeks.

> > > Hugs

> > > Becki and 8 systemic

> > >

> > >

> > >

> > >

[Guest guest]

Hi and ,

Are you out there? Are you heading in for surgery with Rand in February

or has it been postponed?

[Guest guest]

:I'm so glad that is feeling so much better! Reading your post made my day~ and Rob 18 Spondy Re:9 Year Old with JRA > Hi Shirley.> > All our kids are unique. > > My daughter is unlucky like your child and had a sudden > onset of joint involvement. To begin with only her fingers > were affected and she couldnt hold things, couldnt grip > anything. She was diagnosed in February this year and a > week later took a massive flare and landed in hospital. We > watched the arthritis go up her body and the doctors sat with me > shocked. We could see new joints flaring.> > was diagnosed with Enthesitis Related Arthritis in > February and Psoriatic Arthritis 3 weeks ago. She has > involvment with every joint in her body and all the tendons end > points as well.> > We are on Paracetamol, Codiene, Methotrexate, and Piroxicam.> > Methotrexate is a mild form of chemotherapy that is used > to treat Juvenille Arthritis usually with good results. > > It can cause nausea and an upset tummy for a day or so > but the change i have seen in meant it was worth taking > it. It is an immune suppressant as well which means that your > child may be more prone to colds and flus etc. has > only had mild throat infections and one ear infection. > > It is not unusual for multiple joint involvement to > happen. Nor should you feel alone in this.> > Have you asked about steroid injections? the reason i say > is that had her joint injections last week and has been > bouncing around ever since.> > She was playing her tambourine last night and generally > bouncing around like a jumping bean. Hasnt stumbled or > fallen on the stairs and is running everywhere now instead of > walking or hobbling. She will need joint replacements > later on in her life but for now im just happy.> > We are also starting Anti TNF meds (anti tumour necrosis > factor) we all have these cells in our body and they are the > cells attacking our kids. so this med will block it. The one > is moving too is called Enbrel in the US or Etenacept here > in the UK and ive been told it works best in conjunction with > methotrexate. > I have also chosen to eliminate hydrogentated fats from > her diet and most fats to be honest and have placed her on more > red meats, fish and pulses. > > has trouble retaining weight so i am going to see > about some protien shakes for her. > > I hope i havent over whelmed you. The best advice i > can give is to research, research, research. Ask the doctors > allllllllllll the questions you have. Write them down if > you have to and get him to go thru each one with you.> > and age 11. ERA and Psoriatic Arthritis (HLA > B27 +)> SW Scotland (near Glasgow)> > > ---------------------------------> For ideas on reducing your carbon footprint visit > For Good this month.