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[Guest guest]

Hi ,

Glad the latest check up was a good one. I hope that your daughter's ankle pain

gets better real soon. It's so hard when that part of the body is affected. We

depend so much on our feet and often take them for granted, until they become

painful. One question- does she ever get nodules by her ankles, those bumps?

Josh

used to get them alot, in different parts of his ankles/feet. Also, on his

wrists

and fingers. Finally, they seem to have stopped developing altogether. I think

because of the methotrexate. Just wondering.

Also good that you were able to find those pediatric therapists and schedule an

appt. Maybe they'll have some useful tips for Alecia. Ours gave us a latex band

that Josh could use on his feet or arms, for exercising with when he wasn't

feeling well enough to be very mobile.

Wow. So you guys got on a waiting list for the new 2 inhibitors? That sounds

good. Our doctor seems to be really conservative when it comes to the newly

released meds but he did mention maybe trying Arava some time soon. I've been

reading a little about them, as the news releases come out. I use Netscape too

but

unfortunately, I wasn't able to access the URL you suggested. When I did a

search

thru the main site, over 200 articles were mentioned! Needless to say, I don't

think I saw the one you were talking about.

Since you are able to view it, if you ever go back to the site, try right

clicking

on it. A pop down menu should appear and one of the options you should see will

be

Send Page. If you click on that, an email note will open up and you can type in

the address for the and send the whole page to all of us!

Well, guess I better get going. Have a great Friday!

~Georgina

[Guest guest]

Hi Georgina.

I tried to send the page I got net scape by a free download it won't let me

send the page unless I am doing something wrong My friend is a wiz at the

computer I will see if he can do it for me. Sorry you couldn't get it. If I

can figure it out no doubt i will send ok.

My daughter has the nodules in one of her wrists. She can't bend them back as

we can. I thank god she is walking better. The doc got the lab work back today

and said she wants us to up the dose of methotrexate to .3 so that is our next

thing. Alecia is very anemic is Josh? Good to hear he doesn't get the nodules

anymore. I am going to school for medical billing so I am learning all about

the systems of the body it helps to understand a little better what is

happening inside of her. At first I had no clue I was beside myself and stayed

in denial for a while. I still cry alot but I am coming to accept and embrace

the illness and will not stop trying to put into remission. I don't know if

anyone lives in NJ but the place where I take her is having a support group

for parents and children if anyone is intrested and lives in central or North

Jersey.Let me know and i will e-mail the info.

Good to hear from ya wish everyone well

[Guest guest]

Hello ,

No problem, about the web page. That sort of thing happens a lot. We'll come

across it sometime, I'm sure. Besides, when I was trying to find it I found so

many other interesting things to read about!

Yeah, Josh used to have the nodules on his wrists quite often. And on his

fingers.

Better there than on his feet, though. Sometimes they didn't hurt him at all.

Other times, they were painful. I think it was due to the increased dose of

methotrexate that they went away. I read that it is sometimes helpful for that.

Josh used to need to wear wrist braces on both wrists, when he was experiencing

a

lot of pain and soreness in them. The PT adjusted the velcro on them, to make

them

larger and more comfortable for him but these days, he rarely has any wrist pain

anymore :-)

He saw the PT on Thursday and his joints looked really good. There is still a

little loss of range of motion in both wrists and a contracture in one elbow but

everything else is doing so good. Which makes me really happy because thinking

back, just this time last year he was in the midst of a bad flare. Hopefully,

the

increase in methotrexate will take care of Alecia's nodules and help with her

range of motion, too.

Does it bother her to draw or write? We found it helpful to buy some of those

pencil grips that they sell near the erasers and things, by office supplies. For

about $2.00 you can get a pack of 6. We had to buy several packs because some of

Josh's friends thought they were so cool, he shared a couple with them. They

eased

his grip a little and made it not so strenous to write. At times, though, when a

long writing assignment was given by teachers, we did have permission for me to

write out what Josh was saying, in his own words. His fingers would get really

sore and stiff, even taking breaks every so often. Luckily, it's not been a

problem lately.

Josh has had a lot of anemia. I think it often comes with this, or as a side

effect of medications. Iron can be tough on the stomache, though. He had some

gastro intestinal bleeding last year and we were told to stop the iron

supplement

for a while. Last month, the doctor prescribed it again.

Your schooling sounds very interesting. I never studied the body. My major was

psychology and sociology. I think it's great that you are optimistic and hopeful

that your daughter will see a remission. Me, too. Josh got real close to

acheiving

a medicated remission back in October/November. All his labs were improving,

month by month and he was feeling terrific. Then, he got a cold. And it didn't

want to go away. That's when he started having the fevers and rash again, and we

had to raise the prednisone back up to control it :-(

At some point, I'm really hoping that this thing will subside. I've met a couple

kids that used to have it and it has completely resolved itself, after years of

needing medicines. Then again, on another list I'm on, there a few adults who

had

this as kids, and then went into remission...sometimes for as long as 26

years....before it came back again. Josh was one of the more severe cases. But

finally, it's pretty much under control.

That is great that they are offering a support group in your area. If they give

any special tips or advice for families, maybe you can share with us what they

say. I'd love to join you but ..... I'm all the way over here in Maui, Hawaii.

(Originally though, I'm from Long Island New York. Not too far from Jersey!) We

don't have a jra support group on my island, though there is one in Honolulu,

Oahu. Still, I'd have to fly over, so it isn't very conveniently located. That's

why I decided to do this on the computer. Our own cyber jra community! On our

island, I only know of two children with the systemic type of jra. Not very

common, here. I do correspond, via computer, to an adult who has still's

disease.

She lives right here on Maui but way over on the other side of the island. One

of

these days, I'd love to be able to meet with her.

Well , thanks for your message. It's really great getting to meet you.

I hope you and Alecia have a great weekend!

Take care,

Georgina

[Guest guest]

Hello Georgina,

Nice to hear from you again. I noticed when Alecia started school or would

color for a long period of time her wrist would swell I haven't heard any

discomfort complaints lately though.

How did you find out that Josh had stomach bleeding?Alecia sometimes has very

bright blood in her stool she is on the iron sup. One of the docs told me that

having really red blood means a tear from pushing to hard which is a result

from the iron. I am getting concerned though so I am going to check into it

further was there a test that they did on him I should ask for?

I am very interested in phychology and sociology I wanted to go to school for

that but decided against it when I found out how much schooling was involved

to make a go of it. So I read books.

Wow you are real far from your home town! It is probably beautiful there.Much

nicer than NY or NJ I bet.

I think it is wonderful that you started this on-line and I am so happy that I

am a part of it.

Me and Alecia are going for the first appt. teusday for PT then on Fri for

OT.I think it will help her. The Arthritis seems to like the right knee and

both ankles the most. When she first got it it was in her wrists mostly.It is

so cold here this week i know it is affecting her also. She seems to do better

in the summer I wish summers here were longer.If we ever get to Hawaii we will

look you up.

Well I will keep in touch hope everything is well.

[Guest guest]

Hi ,

Hope all is well, these days. In regards to your question, Josh had all of a

sudden been complaining of stomache pain. That was unusual. Hadn't happened

before. He had been on NSAIDS daily for three years, so the regular pediatrician

automatically thought that perhaps they were finally taking a toll. They asked

that I bring in a very tiny stool sample. He emphasized that they only needed a

very little bit, preferably from different areas of his bowel movement. They

told

us to put a large piece of saran wrap across the toilet seat, first, to make it

easier to collect, without it having fallen into the toilet water.

So, we did that yucky stuff and spread it on these little square cutouts on a

construction paper testing 'form'. Then we brought it in and the nurse had drops

of liquid to drop onto the squares, which immediately changed color. The stool

itself was a normal dark brown, no streaks of blood or anything. But those drops

showed that there was, indeed, lots of blood present. So, the next step was an

upper G I series. Josh had to drink a foul-tasting, extremely heavy liquid. It

was

in a small dixie cup but the contents were very heavy in weight. It was frothy,

foamy .... supposed to be flavored. I had prepped him to just drink it all down

in

one gulp but it tasted so horrid that after he had the first sip, he nearly

threw

up. I tasted it, too, so he might feel a little better about it but it really

was

gross. Well, as he stood behind this screen, you could literally watch the

liquid

going down into his stomache, as it was 'broadcast' on a video monitor. Pretty

cool. So, I had them position it so Josh could watch it too but he had no

interest

at all. He just wanted to get out of there. Anyway, the technician pointed out

to

us the irritated edges around his stomache. There was no ulcer but there was

lots

of irritation and inflammation.

So, we had to discontinue the indomethacin, which Josh had been taking 25mgs of,

twice a day. We also had to cancel his iron supplements. Josh was happy, since

it

meant three fewer pills everyday. We had to start cytotec, to help heal his

stomache. Unfortunately, pretty soon we realized how helpful the NSAID had been,

in terms of keeping down the inflammation and helping with his joint pain. With

all the other stronger meds I didn't really think that it did so much but in

just

a couple days Josh had complaints of pain and soreness, so we had to look for a

different NSAID. We got Relafen, which is supposed to be pretty gentle on one's

stomache. It didn't really work so good, for Josh. The doctor had us raise the

dose but it never gave as good relief as the indomethacin. After two months, he

started indomethacin again. Concurrently, with the cytotec. He's been okay for

the

past eleven months. He only takes a morning dose now, except if he has a lot of

soreness.

How was your appt with the physical therapist? Did you learn anything helpful,

in

terms of joint exercises? I hope that your daughter will have some improvement

in

her knee and ankles. Ankles used to be a real trouble spot for Josh, too, and I

am

forever amazed and very grateful that they have been okay for the past 10

months.

Now, it's mostly just his wrists and an elbow. Much easier for him, than his

feet

were.

Some say the weather doesn't really affect people with arthritis, as much as we

think. I have read that the barometric pressure may have some relation to

swelling/imflammation, though. I know that during the rainy season, Josh does

seem

to get more soreness than at other times. I guess it's an individual type

thing.They always say that swimming is a wonderful activity for people with

arthritis. Here, we can go year round, whenever Josh is up for it.

I'm really happy to be here in Hawaii. After I arrived, I couldn't believe that

I

had spent so many years (12!) in the Boston area and I wondered why. I had

always

enjoyed vacationing in the Carribean islands. Life seems so much easier when you

don't have to deal with the cold. No more snow shovelling and needing layer upon

layer of clothing! The climate here is tropical, with trade winds, so we don't

get

the excessive heat like down south in Florida or Georgia. It's ranged from about

68 at the very coldest to 97 at the hottest. Just perfect, for me. We don't need

air conditioning, even, in my part of the island. It's much prettier here than

on

the east coast. It amazes me that the locals often don't seem to appreciate the

beauty of the land. I definitely do. Great beaches, mountains, tropical rain

forests ... and so many rainbows!!! If you are ever in this part of the world,

definitely look us up. That would be fun!

Well, let us know how the PT went. Hope it was a good visit!

Take Care,

Georgina

[Guest guest]

Hi Georgina,

Hope all is well. We saw the OT and all went well we have this silly putty

stuff to work with at home. We didn't see the PT yet the appointment was to

early in the morning I had to cancel we are seeing her next week on Fri. at 8

am not a much better time.Gotta do what ya gotta do though it seems that it is

very hard to do any scheduling anymore with doctors. Alecia is doing well

these days thank god she was rollerblading today. I like to see her do things

like that it gives me a warm feeling inside.

The place where you live sounds absolutly wonderful.

I am doing a presentation at school on JRA, we were aloud to pick an illness.

I found a cool site if you would like to look at it.I hope you can find it

this time.It is filled with stuff.

<A HREF= " http://pharminfo.com/disease/ra/ra-site.html " >Rheumatoid Arthritis

Disease Center</A> Here is a hyperlink first time i did it hope it works good

luck. <A HREF= " http://pharminfo.com/pubs/msb/rheumart.html " >Focus On...

Rheumatoid Arthritis</A>

Well hope to hear from you soon. If you have any pictures of RA can you send I

would like to put some pics on the over head for my presentation.

Oh i almost forgot thanks for the info on the stool test I am going to ask my

doc when I go back.Bye

[Guest guest]

Georgina,

Thank you so much for the site i will take a look at it i don't know about

tonight alot sf things to do.I didn't do my presentation yet i am working on

it i got some great stuff.The instructor will probably have to tell me to sit

down.It is just so personnal for me i am sure you know what i mean.I even got

a brochure on-line and printed it out it was cool.The things you can do with

computers.Technology is grand i didn't have to leave my house for research it

is beautiful thing.

Well while i am here i will tell you how alecia is doing.She seems to be doing

better all i can do is cross my fingers and hope it lasts.I didn't het the

article about the wheather affecting arthritis it said i had the wrong url.

which is typical i found the main index i will search another day for it. We

have a slew of doc appts this week!!Her insurance co. approved her for the pt

and ot along with the orthodics she needs so that is a good thing to share.She

is just so pale lately i know that is the anemia it's just that she always

looks sick.

How is your son doing?I hope he is feeling better.All we can do is pray for

the best and keep educating ourselves i guess.

Well take care, again thanks