RE: nn (was Ibuprofen isn't cutting it...)

[Guest guest]

was on Celebrex daily for about 18 months. His rheumy wanted him off as he

felt that there was more chance of side effects from taking the NSAID for too

long. He felt the disease modifying drug (was on mtx) should and would

take care of the arthritis. I agreed with the dr. was weaned off the

Celebrex from 800 mgs a day to none. And the mtx was doing the job and was

headed toward a medicated remission. He did not need any additional med at that

time. As I have said before, when became an adult he made the decision (as

some will do) to stop treatment. He does still have issues with his arthritis,

and I still suggest getting back to the rheumy – we did find a very good adult

one he saw twice – but he does not want to go.

Anyway, there were some circumstances that occurred that made me leery of

extended use of NSAIDs. If your dr is monitoring the use of them and you feel

comfortable with her treatment, you should do what you feel is best. If you have

any questions, ask your dr. Talk with her about any concerns you might have.

What type of side effects is having from the mtx? It may be that Mobic

does not have the potential side effects that other NSAIDs might have. I have no

experience with that drug. Michele (23, spondy)

From: [mailto: ] On Behalf Of

nn

Sent: Wednesday, February 16, 2011 12:04 PM

Subject: Re: Ibuprofen isn't cutting it...

Hi ladies,

What do you consider " long term " use of NSAIDs? has been on some kind of

NSAID since Oct 2009 - so going on 15 months I guess. Since we switched to Mobic

the Rheumy AND Ped told us we could discontinue the tummy protector, and

doesn't really have stomach pain, except occasionally it does crop up and is

helped by eating, which makes me worry about ulcers. is on Kineret,

Methotrexate, and Mobic, and recently weaned from prednisone. We are now weaning

Methotrexate, and I was surprised when the Rheumy chose to weant this first,

rather than discontinue the NSAID. I questioned it, and she said that the Mtx

was causing more side effects than the Mobic so she wanted to do it in that

order. She says she usually weans in this order: pred, mtx, then NSAID. It seems

there isn't a " general " mode of treatment when it comes to this, as I see many

kids being weaned from the NSAID before the Mtx. Thoughts?

nn (, 9, systemic)

> > >

> > > > Thanks for your reply! She has been having pain/stiffness since June.

Its

> >mainly her right knee, but she's had times when her left knee was hurting her

as

> >

> >well...this isn't the first time she's complained of her ankle hurting

either.

> >When the rheumy saw her (on a really good day...), he said he saw no signs of

> >arthritis on the exam. He ordered a ton of blood work and x-rays. Her sed

rate

> >and c-reactive protein were both elevated and the x-ray showed a " probably

small

> >

> >joint effusion of the right knee " . After that, he sent her for an ultrasound

of

>

> >her knees which confirmed an effusion of the right knee. After that he called

> >and said she does have JRA and started her on the ibuprofen.

> >

> > > >

> > > > We live right outside of Charlotte, so there are a lot of specialists

near

>

> >by...including pediatric orthopedic doctors. There is not a ped

rheumatologist

> >here though. The one she is seeing is in Chapel Hill. From what I'm reading,

> >doctors seem to treat more aggressively than they seem to be doing with Ella.

> >I'm going to talk to her pediatrician about everything at her appointment on

the

> >

> >23rd and if I don't get anywhere with that, I'll call the rheumatologist and

see

> >

> >what he says. I just want her feeling better.

> >

> > > >

> > > > She has seen an ophthalmologist. He is familiar with JRA (his wife

had/has

>

> >it) and said that while everything looks good right now, he wants to see her

at

>

> >least every 6 months.

> >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >> ,

> > > >> With five girls I am sure you are very busy. It only takes an NSAID

about

>

> >two

> >

> > > >> weeks to take effect so it does not sound like it is cutting

it.Injecting

>

> >the

> >

> > > >> knee sounds like a good idea but now that there may be ankle

> >involvement,where

> >

> > > >> does that leave it? I understand you not wanting your child on a bunch

of

>

> >meds

> >

> > > >> due to the fear but in all honesty a lot of the times all those strong

> >meds are

> >

> > > >> better then the damage that the arthritis is doing.You are not even in

a

> >month

> >

> > > >> of diagnosis so the fear is understandable so my best advise is to keep

> >asking

> >

> > > >> questions and learn as much as you can about this disease.There is an

> >abundance

> >

> > > >> of info on the web but things have changed so much over the last decade

I

>

> >would

> >

> > > >> try and look at things over the last few yrs.

> > > >> We travel six hours,by choice but is there a hospital closer with

> >Orthopedic

> >

> > > >> surgeons that could inject your daughters knee? I don't understand the

> > > >> ultrasound because you can manipulate the knee and bring all of the

fluid

>

> >to the

> >

> > > >> top. Not saying that an ultra sound is bad just in my sons case it was

> >never

> >

> > > >> needed.

> > > >> You really might want to consider talking to your ped rheumy about

> > > >> Methotrexate. It has been used for decades and is one of the first

steps

> >of

> >

> > > >> standard care. It is a chemo drug but you must understand the doses

used

> >to

> >

> > > >> treat our kids are 100's-1,000's less then someone with cancer. Make

sure

>

> >to get

> >

> > > >> Ella into a pedOphthalmologist for a slit lamp test if you haven't

> >already.

> >

> > > >> Pauci kids are at a greater risk for eye inflammation that can have no

> >symptoms

> >

> > > >> until severe.

> > > >> Keep us posted and hugs,

> > > >> Becki and SoJra

> > > >>

> > > >> ________________________________

> > > >> From: mom2fivegreatgirls

<saraha1213@...<mailto:saraha1213%40gmail.com>>

> > > >> To:

<mailto: %40><mailto: %40ya\

hoogroups.com>

> > > >> Sent: Tue, February 15, 2011 9:37:02 PM

> > > >> Subject: Ibuprofen isn't cutting it...

> > > >>

> > > >> Ella was officially diagnosed with JRA (pauci) on 1/21. The

rheumatologist

> >

> >told

> >

> > > >> us to start giving her 150 mgs of ibuprofen 3 times a day and follow up

> >with her

> >

> > > >> pediatrician in a month to see how she's doing. He said if, after 2

> >months, she

> >

> > > >> was still having problems they would do another ultrasound and if she

> >still had

> >

> > > >> fluid on her knee, they would do steroid injections. They said they are

> >going

> >

> > > >> to try to do as much follow up with her pediatrician (who will talk to

the

> >

> >

> > > >> rheumy) as possible to cut down on the amount of traveling we have to

do

> >(the

> >

> > > >> rheumy is a little over 3 hours from here). Well, the ibuprofen isn't

> >working.

> >

> > > >> Her follow up appointment is on 2/23. I know it takes some time to

build

> >up in

> >

> > > >> her system, etc, but even before we were told to give it to her 3 times

a

>

> >day,

> >

> > > >> we were giving it to her any time she was hurting which was pretty

> >often...at

> >

> > > >> least several times a week. She's still waking up almost every day

stiff

> >and

> >

> > > >> limping. She's still in pain almost every day. Today she woke up from

her

>

> >nap

> >

> > > >> today complaining of her ankle and heel hurting. DH thinks I should

push

> >for

> >

> > > >> the doctor to try a different medicine or do something else. Should I?

Or

>

> > > >> should I give the ibuprofen another month and see if it helps? I don't

> >want to

> >

> > > >> put her on a bunch of meds, but I want her to feel better! Maybe I'm

just

>

> >being

> >

> > > >> impatient. I don't know....

> > > >>

> > > >> I'm sorry for posting my intro and then disappearing. Things have been

> >crazy

> >

> > > >> around here. On top of everything with Ella, DH is working overtime a

lot

>

> > > >> (January-February is always crazy busy for him) and I've had the flu.

DD#2

> >

> >is

> >

> > > >> having some problems with seizures and headaches (she has epilepsy, but

> >until

> >

> > > >> recently it was well controlled with meds) so they are doing more tests

on

> >

> >her.

> >

> > > >> Things have just been really busy. I have been reading almost all of

the

> >posts

> >

> > > >> and you guys are in my thoughts and prayers. Thanks for the warm

welcome!

>

> >

> > > >>

> > > >>

> > > >> -Mom to five beautiful little girls!

> > > >>

> > > >> __________________________________________________________

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