Re: [JRA]: update on + questions

November 26, 2007

Hello-

here are my thoughts.. sorry not formed well just feeling sick but stuff

stood out to me in your email so much I had to comment

- the tmj and migraines are likely agrivating one another. I have that... i

saw an orthodontist or 2 or 3 and than wore braces for 2.5 years.. had some

impacted wisdom teeth removed and than they wanted to break my jaw and reset

it.. my rheumy advised against it saying if they make one mistake, you might

end up in more pain.. not worth it.... my teeth do not look like they ar bad

at all.. no one ever understands why i needed braces but it did help the tmj

some as well as wearing a mouth guard to prevent grinding, clenching and

putting my tounge between my teeth to force my jaw to relax....

- Becauser of the influence of my ped. rheumy and so much reading of

research, it is my unprofessional but learned expereince that it's important

to be aggressive in the treatment of JRA to prevent life long damage. The

fact that y has been having hardly any to no improvement on her JRA

with MTX is a big sign that she def. needs more and the doctor is afraid to

treat aggressively when this is the most reccommended pattern of

treatment...

- given the above plus not doing base line bone scan.. etc to see where her

joints are is crazy... you need the progression marked so therefore you can

make better treatment decisions... maybe you need to change rheumy's.. i

dont know if that's an option but this doesn't sound right

- sounds like too much pain... too little treatment.. too little wait and

see.... not helpful.... FOUR months is way to long.... that's for sure...

esp with NO improvement...

- umm.. oh yeh.... I have the banana issue... lol.... I'm not sure why... I

always have blamed it on allergies. I can't eat bananas and some other

fruits esp from certain stores. I don't know if its something they spray on

it because if i get bananas at the health food store.. organic ones etc, i

do not feel soreness in the mouth but from some place like food 4 less....

it always happens... it's not in my head because even if someone else shops,

I can tell the difference immediately.... I will get soreness and even a

little burning sensation sometimes and I'm not on MTX. I can almost bet this

is a chemical/ allergy type thing she's having

- well this is morre of a lettetr han i expected.. guess ic ant help

myself.. lol.

- it REALLY sounds like amanda needs a new rheumy willing to jump on this

treatment b/c too much damage can be happening and you don't even have any

proof, since baseline imagery test haven't been done. I have a older friend

with a Rheumy like that and it ticks me off because her joints are sOOOOO

deformed and she has NO baseline studies to even see how much progression

she has ahd in how much time. He finally did when she asked but so much is

messed up now.. it's like... kinda... like better latet han never but would

have been good to have it sooner... it really sounds like 's rheumy is

reluctant to hit hard as some Rheumy's are but the highest standard in

treating JRA by the ACR esp when it's being such a pain and progressive is

hitting it hard and fast and using biologics is nearly standard of care in

moderate- severe cases so sounds like her rheumy is a dud.. .sorry.. okay im

done

Hugs...

Issadora

On Nov 26, 2007 11:13 PM, nancy barnes <nancyb315@...> wrote:

> had her rheumy appt almost 2 weeks ago; the dr felt the pred did

> reduce some of her swelling but made no visible improvement in her hands.

> She says has severe TMJ and needs to see the dentist asap for that.

> She increased 's mtx, again, and hopes that after the course of pred,

> the mtx will have some success...honestly, I am less optimistic, as it has

> been almost 4 full months on mtx, with the only improvement coming from the

> pred. How long is reasonable to stay with a med when you are not seeing

> results? I can't stand seeing her in constant pain - part of it is

> migraines... she sees a new neurologist for that next week. This past week,

> she has hardly been able to bear weight on her hip, her feet were swollen.

> It is discouraging, to say the least.

>

> The rheumy still has never taken x-rays, or diag. ultra-sound to track

> damage/improvement to her most severely affected joints. Should I be

> concerned about that? I heard and read that it is impt to have a baseline

> and to track progress to see if meds are stopping damage. Dr felt pred did

> not help 's hands because they were most severe, and, I feel if

> treatment had been started in a timely manner, there would be less damage

> (though I did not say so).- grrrr

>

> Also, does not have actual sores in her mouth from the mtx but she

> keeps commenting about various food hurting her mouth and making it sore -

> e.g. bananas.....do any of your children have that problem? I thought some

> of you mentioned a mouthwash that helps but I cannot recall what it was...

>

> Anyway, that is it - she returns to rheumy in Dec. My guess is she will

> raise mtx again....

>

> Feedback would be greatly appreciated -

>

> Thanks to all for your support.

>

> (, 17, poly)

>

> ---------------------------------

> Be a better sports nut! Let your teams follow you with Mobile. Try

> it now.

>

November 26, 2007

Oh y4h also.. one thing i rememeber re. prednisone...

in general drs use it for a flare.... to quickly hit the inflammation... but

for someone with persistent symptoms and no improvement on current treatment

is indicative of.... time to add. change medication.. not just give pred....

it concerns me that has problems in multiple areas and the dr is just

saying well her handds are 'better' cause the entire issue is not being

addressed which is undertreatment... if of course she was being properly

treated and this is a flare.. than pred makes sense but in this case, that

doesnt sound like it... of course I'm not an MD but I have had a lot of

expereince around this stuff esp for the time I spent working in mhy peds

rheumy's clinic and also at camp working with the medical staff.. they

taught me so much, I can kinda figure out who has what disease just by

looking at them in the waiting room... lol... okay so i just made myself

sound like i know a lot but whatever.. i think you get my point... i think

this rheumy needs to be fired ...

Izzie, the opinionated

On Nov 26, 2007 11:47 PM, Issadora <flyfreeizzie@...> wrote:

> Hello-

>

> here are my thoughts.. sorry not formed well just feeling sick but stuff

> stood out to me in your email so much I had to comment

>

> - the tmj and migraines are likely agrivating one another. I have that...

> i saw an orthodontist or 2 or 3 and than wore braces for 2.5 years.. had

> some impacted wisdom teeth removed and than they wanted to break my jaw and

> reset it.. my rheumy advised against it saying if they make one mistake, you

> might end up in more pain.. not worth it.... my teeth do not look like they

> ar bad at all.. no one ever understands why i needed braces but it did help

> the tmj some as well as wearing a mouth guard to prevent grinding, clenching

> and putting my tounge between my teeth to force my jaw to relax....

>

> - Becauser of the influence of my ped. rheumy and so much reading of

> research, it is my unprofessional but learned expereince that it's important

> to be aggressive in the treatment of JRA to prevent life long damage. The

> fact that y has been having hardly any to no improvement on her JRA

> with MTX is a big sign that she def. needs more and the doctor is afraid to

> treat aggressively when this is the most reccommended pattern of

> treatment...

>

> - given the above plus not doing base line bone scan.. etc to see where

> her joints are is crazy... you need the progression marked so therefore you

> can make better treatment decisions... maybe you need to change rheumy's.. i

> dont know if that's an option but this doesn't sound right

>

> - sounds like too much pain... too little treatment.. too little wait and

> see.... not helpful.... FOUR months is way to long.... that's for sure...

> esp with NO improvement...

>

> - umm.. oh yeh.... I have the banana issue... lol.... I'm not sure why...

> I always have blamed it on allergies. I can't eat bananas and some other

> fruits esp from certain stores. I don't know if its something they spray on

> it because if i get bananas at the health food store.. organic ones etc, i

> do not feel soreness in the mouth but from some place like food 4 less....

> it always happens... it's not in my head because even if someone else shops,

> I can tell the difference immediately.... I will get soreness and even a

> little burning sensation sometimes and I'm not on MTX. I can almost bet this

> is a chemical/ allergy type thing she's having

>

> - well this is morre of a lettetr han i expected.. guess ic ant help

> myself.. lol.

>

> - it REALLY sounds like amanda needs a new rheumy willing to jump on this

> treatment b/c too much damage can be happening and you don't even have any

> proof, since baseline imagery test haven't been done. I have a older friend

> with a Rheumy like that and it ticks me off because her joints are sOOOOO

> deformed and she has NO baseline studies to even see how much progression

> she has ahd in how much time. He finally did when she asked but so much is

> messed up now.. it's like... kinda... like better latet han never but would

> have been good to have it sooner... it really sounds like 's rheumy is

> reluctant to hit hard as some Rheumy's are but the highest standard in

> treating JRA by the ACR esp when it's being such a pain and progressive is

> hitting it hard and fast and using biologics is nearly standard of care in

> moderate- severe cases so sounds like her rheumy is a dud.. .sorry.. okay im

> done

>

> Hugs...

>

> Issadora

>

> On Nov 26, 2007 11:13 PM, nancy barnes <nancyb315@...> wrote:

>

> > had her rheumy appt almost 2 weeks ago; the dr felt the pred

> > did reduce some of her swelling but made no visible improvement in her

> > hands. She says has severe TMJ and needs to see the dentist asap for

> > that. She increased 's mtx, again, and hopes that after the course of

> > pred, the mtx will have some success...honestly, I am less optimistic, as it

> > has been almost 4 full months on mtx, with the only improvement coming from

> > the pred. How long is reasonable to stay with a med when you are not seeing

> > results? I can't stand seeing her in constant pain - part of it is

> > migraines... she sees a new neurologist for that next week. This past week,

> > she has hardly been able to bear weight on her hip, her feet were swollen.

> > It is discouraging, to say the least.

> >

> > The rheumy still has never taken x-rays, or diag. ultra-sound to track

> > damage/improvement to her most severely affected joints. Should I be

> > concerned about that? I heard and read that it is impt to have a baseline

> > and to track progress to see if meds are stopping damage. Dr felt pred did

> > not help 's hands because they were most severe, and, I feel if

> > treatment had been started in a timely manner, there would be less damage

> > (though I did not say so).- grrrr

> >

> > Also, does not have actual sores in her mouth from the mtx but

> > she keeps commenting about various food hurting her mouth and making it sore

> > - e.g. bananas.....do any of your children have that problem? I thought

> > some of you mentioned a mouthwash that helps but I cannot recall what it

> > was...

> >

> > Anyway, that is it - she returns to rheumy in Dec. My guess is she will

> > raise mtx again....

> >

> > Feedback would be greatly appreciated -

> >

> > Thanks to all for your support.

> >

> > (, 17, poly)

> >

> > ---------------------------------

> > Be a better sports nut! Let your teams follow you with Mobile. Try

> > it now.

> >

November 27, 2007

this rheumy used to be head of CHOC (Children's Hospital Orange County) and now

is at UCLA and does research and is highly esteemed among her colleagues..yada,

yada, yada.....BUT, she is verrrrrry cautious....I think to the point that it is

a detriment to the pt sometimes. There was another rheumy saw for a

second opinion, but he said she had a pain disorder, and discounted her swelling

as " soft tissue " swelling....??? and while some find him to be good, we would

not see him again, so, where to go....UCLA has other rheumys, but it is so

tightly interwoven, you know? A friend said, if we drive to UCLA, why not

Scripps? I don't know where to go. I would like to take her to the rheumy I

saw but she only sees 21 and older.

The banana thing...I do buy organic... I wish I could think of what other

foods....now, I have always had the banana issue(and hated them until recently),

and i am convinced it is because they fed me bananas when I was only 5 lbs and 3

weeks old....trying to fatten me up so my parents could take me home....lol...

Anyway, I appreciate your input. I am not sure who I would take to

outside UCLA....

How is your back doing? I have been seriously off-line and out of the loop

here.

Thanks for your input - I appreciate it.

(, 17, poly)

Issadora <FlyfreeIzzie@...> wrote: Oh y4h

also.. one thing i rememeber re. prednisone...