Update

[Guest guest]

> but my guess is the fact that you can't make it thru a work week would help

prove your case <

That is what I was thinking. Plus if you do push yourself and end up hurting

worse...let DSS call an ambulance for a trip to ER for pain management. Then it

becomes a workers comp case (aggrevating an old injury or disorder). One way to

see a doctor.

Viv in GA

[Guest guest]

> but my guess is the fact that you can't make it thru a work week would help

prove your case <

That is what I was thinking. Plus if you do push yourself and end up hurting

worse...let DSS call an ambulance for a trip to ER for pain management. Then it

becomes a workers comp case (aggrevating an old injury or disorder). One way to

see a doctor.

Viv in GA

[Guest guest]

, I am glad all the tests came back well. It is going to suck being in

the hospital on Christmas, but you have a great attitude! Let the party come

to you!! We will be saying extra prayers for you and your surgery. I hope it

provides the relief that you so need!

Alia and Caroline,age 2, poly and uveitis

Update

So I met with my surgeon and fortunately all the tests came out well and the

surgery is ready to be done and I am able to get the complete surgery done.

The unfortunate part is that my surgery is on December 23rd.. which means..

part if not all of my Christmas will be spent in the hospital..which sucks.

Its

ok though it means I will be starting the new year with one disease crossed

off.. One down.. two to go.. Spond and JRA you are so going down in 2005

Lots of Love

[Guest guest]

Hope that everything goes ok. You will be in my thoughts and prayers.

Next Christmas you will be much better I am sure! Thinking positive

thoughts, Michele

Update

So I met with my surgeon and fortunately all the tests came out well and

the

surgery is ready to be done and I am able to get the complete surgery

done.

The unfortunate part is that my surgery is on December 23rd.. which

means..

part if not all of my Christmas will be spent in the hospital..which

sucks. Its

ok though it means I will be starting the new year with one disease

crossed

off.. One down.. two to go.. Spond and JRA you are so going down in 2005

Lots of Love

[Guest guest]

;

I was so glad to hear that you came through the surgery just fine and that you

are back home again so quickly! i hope that the healing is rapid and that you

avoid a flare. And, that 2005 will be an awesome year for you! Get well soon!

and Rob 15 Spondy

[Guest guest]

Glad to hear it went well and you were out for the holiday. I thought of

you and said a little prayer Christmas Eve that you would do well. Hope

your Christmas was great, and you are healing ok, Michele ( 17,

pauci & spondy)

Update

I wanted to wish you all a very Merry Christmas. I got the best

Christmas

present today when I was released from the hospital at 11 this morning.

The

surgery went perfectly and there were no complications. The first two

nights

were hellish the pain was way more then I could have expected (and

walking

was the worse). The pain is still bad but I am feeling better, my back

is

killing me because I haven't been able to stretch because moving my

stomach

hurts. I definitely feel a flare coming and I'm just praying it wont

be to bad.

The incisions look good..well I mean as good as five incisions in a

stomach

can look. I'm just greatful to have this surgery behind me and can't

wait to

be fully recovered. I hope everyone is doing well and that your

Christmas'

were amazingly wonderful!

Lots of Love

Poly JRA and Spondy, 20!

[Guest guest]

get a second opinion and buy some thyroid books so you can educate yourself.

Gracia

Hi all!! I just went back to the doc for a recheck. My thyroid as of

last post was at 8.9 and as of 12-23-04 I am at 3.4 and my doc says

I am doing great. I do feel a lot better and I have lost 15 pounds

so far. My energy level is not where I wish it were but that is due

in part to being anemic. When I tell anyone with a thyroid problem

that I was on .025 mcg of Synthroid and my levels have dropped so

much in 3 months, they all say get a second opinion. What do you

think?

Thanks,

Shonda René

[Guest guest]

Shonda,

You wrote:

> ... When I tell anyone with a thyroid problem

> that I was on .025 mcg of Synthroid and my levels have dropped so

> much in 3 months, they all say get a second opinion. What do you

> think?

First, I think you have your units mixed up. A dose of 0.025 milligrams

(mg) would be remarkably small already, but you have written it as 0.025

micrograms (mcg), which is a thousand times smaller and not one of the

available sizes. Even at 0.025 mg (or 25 mcg) that is not likely to be

enough to make that large change in TSH by itself. A recommended dosage

schedule is on one of the pharmaceutical web sites. Typical maintenance

doses for complete thyroid replacement are above 100 mcg. A starting

dose is more typically something like 75 mcg.

Thus, it is possible that your still have substantial thyroid function

left and your levels are moving up and down mostly on their own. This is

a common problem with Hashimoto's. Or, your test numbers may not be

correct. All lab procedures can include mistakes. I don't think a second

opinion is necessary, but you need to keep monitoring closely. When

symptoms (either hypo- or hyper-) occur, get back to your doctor.

Chuck

[Guest guest]

Hi ,

I know how difficult the chicken pox vaccine was for you. You

researched it well and I hope that you will have peace with your

decision. I will be keeping in my prayers while you going thru

this waiting period of being off NSAIDS and prior to starting the

MTX.

You mentioned your search of trying to pump up with some

calories. I am a social worker in a nursing home and we use a type

of juice called " resource " . It is flavored like O.J. but packed with

calories.

Another option that might work is making some fruit smoothies.

Assuming likes juice you could blend in some frozen berries or

any fruit a little cool whip and wha-la a perfect calorie booster.

Keep us posted on how these next days/weeks go for you and .

(aundrea 9 systemic)-

-- In , " " <earthmama2k@y...> wrote:

>

> Well, after about six weeks of researching the chicken pox vaccine

> and weighing the theoretical risks of developing Reye's syndrome

> from NSAIDs, not to mention messing with an already messed up immune

> system, verses the very slim risk of catching wild chicken pox while

> on methotrexate, which is never good, we finally made a decision to

> go ahead with the vaccination. I took off his NSAID a full day

> before his appointment and will be trying to keep him off it for at

> least a week, preferably two, just to be safe. The manufacturer of

> the vaccines says to avoid salicilates for 6 weeks after the

> vaccination is administered so that is how long we're going to wait

> before we start him on the methotrexate. It seems like forever but I

> know it'll be over before in the blink of an eye. I can hardly

> believe it's been a year since he first started complaining about

> his elbow hurting....

>

> We brought up our concerns about his growth. He's 10 and is 52 " and

> 52.5#. He's never been big but when he's the shortest 10 year old

> you know and even slims are too loose you tend to worry.... His pedi

> wasn't too worried about his height (25th%) because he's following

> his curve and he's still got a couple years before the prime growth

> spurt window opens. However, she was worried about his weight. He

> dropped off the chart since his last visit at age 8 when he was in

> the 5th%. She did order an x-ray of his hand to check for bone

> growth and I should be hearing back on that in the next few days.

> She wants us to try and pump more calories into him and come back

> for a weight check in a couple months. She suggested Carnation

> Instant Breakfast or Boost but both of those are dairy based and we

> don't do dairy so now I'm trying to figure out how to get more

> calories into him. I'd prefer healthy sources so it looks like I'm

> going to be hitting the internet again....

>

> Hope & Blessings,

> & (10-poly)

[Guest guest]

So you on Rob are both on Enbrel? That's cute! in a weird arthritis way..

lol. Hopefully weight loss and hair loss wont happen.. I have fine hair to

begin with (and I have an odd shaped head so a bald or balding me just wouldn't

be cute) and have already lost more weight then my doctors like.. but

whatever I'm willing to take the chance and see if it works. I feel ok, but I

want

to know what it feels like to feel great, if this could help then its well

worth it, right? I'm hoping they get this GI stuff taken care of too, its

frustrating to have one problem fixed and another problem pops up in its place.

I

guess that is the life of chronic illness.. Anyway how is Rob doing?

Lots of Love

(Sponyish.. because its sorta poly and its mostly spondy.. so its now

spondyish, 20)

[Guest guest]

:

I've been on Arava for probably a year and a half. It worked pretty good

for me at first. First side effects were some diarrhea. Its very common

with this drug. Then it sort of settles out as your body gets used to it.

The other thing, was weight loss. I was on a diet anyway, but it helped

me to lose a stubborn 10 lbs I had trouble getting off. That was a plus.

As far as hair loss, I was on MTX and Arava together and last summer my

hair (very thick to begin with) was getting noticeably thinner. They

upped my folic acid to 3 mg a day, and voila, no more hair loss.

I started Enbrel about 3 weeks ago and I'm feeling sooooo much better!

Its unbelievealbe to wake up in the morning and feel as good as I do.

So that's all I know about Arava. I don't have to worry about pregnancy,

had a hysterectomy 14 years ago...

Interesting what they said about spondy and poly, I heard one of the

rheumies at AJAO in San Diego last summer talking about that, that

oftentimes spondy patients are misdiagnosed as poly, but later turn out

to be really spondy pts.

I'm so sorry to hear that you are having more GI problems, I also read it

on your website. You have been through too much. I hope so badly that all

this works out better, it just really stinks that you still are having

problems in that direction. Rob and I will be praying for you.

Keep us posted on things, ok?

and Rob 15 Spondy

On Fri, 11 Mar 2005 18:13:57 EST bncknwurnumber@... writes:

Today was my check up at my rheumi's and it went pretty good actually.

The

weather in California has been amazing (80's) so the JRA has been doing

pretty good. Dr. Sanborge was not in the clinic today so I saw Dr. Lee

and Dr..

ovich (for you LPCH people). So basically I have a rash all over

my body

which strangely resembles the systemic rash and the best thing is they

have

no clue why I have a rash. It could be related to a flare in one of

those

weird crossing JRA lines way, or it could be a virus who knows. But it

was also

noted that I have swelling and stiffness and my spine does not seem to

be

responding as well to Enbrel so they are going to add Arava. I'm a

little

worried about Arava just because what some of the side effects are hair

loss and

GI effects.. Plus it worries me is that they said if I want to get

pregnant I

have to be off Arava for two years, obviously I'm not thinking of

getting

pregnant right now but someday yes. The good thing is that I actually

can't

start Arava right away anyway so I can think about it for a little

while. Due

to some recent GI problems (blood coming from a place where blood should

not

come from) I am getting a sigmoidoscopy (like a colonoscopy but not as

extensive) so I have to wait till that comes back ok and the rash is

gone before I

start the new med. I'm not stopping Enbrel they just want to add a new

med.

Plus they also want to check and make sure all my counts are good and

find

out if I might possibly have IBD (so blood tests for that too).

Apparently I

never got the HLA B27 genetic test either so I'm also getting that. So

other

interesting news is that I finally understand the Poly JRA spondy dx..

Apparently when girls present with spondy symptoms but also present with

other

joint problems they are classified as Poly JRA. As they get older if

the

symptoms presist and they start fitting the true Spondy category then it

is change

to a spondy with I think what she called extensive category? I dunno

basically

its like Spondy and JRA all mixed into one lovely dx. But it does make

a

remission less likely was basically what I got from it. All in all

though it

wasn't to bad I'm glad we are finally out of the lets see what will

happen

with this and instead they are adding something.. its good I guess.

Anyway so

if anyone has any information on Arava I would really appreciate it.

Sorry

this was so long..

Lots of Love

(Spondyish, 20)

[Guest guest]

Weird, cute its all the same. At least he has someone to understand what

its like. Its sometimes hard to explain to my parents what the pain feels

like, so in a way its good that you two know exactly how the other feels.. at

the

same time its one of the more crapiest situations ever. Dr. ovich (ped

rheumi fellow) said that Enbrel is aware of how bad it is and they are

working to make it better.. I thought I was doing something wrong with the

needle,

like pulling the cap off wrong making it dull.. guess not it really is that

dull.. I'm glad someone else noticed that. I swear the whole reason they made

a rubber cap was so when your getting the shot you have something to bite

on. I refuse to go back to the two shots, I'm stubborn and determined to make

it work. But luckily Enbrel knows and they are working on fixing the shots..

I hope they fix it soon it hurts bad.. Is Rob on the once a week dosage or

is he doing the two shots twice a week?

Lots of Love

[Guest guest]

Oh and I'm not sure about RI, I just found out we are having a family

reunion.. hard choice though go see my JRA family or get to see some of other

family.. hmm but we dont have an exact date for the reunion so I guess we'll

see.

Lots of Love

[Guest guest]

..

I hope you are feeling better soon, can start the new meds and get rid of the

pain you are having.. Take care of yourself..

Emilie and (5 Poly)

Update

Today was my check up at my rheumi's and it went pretty good actually. The

weather in California has been amazing (80's) so the JRA has been doing

pretty good. Dr. Sanborge was not in the clinic today so I saw Dr. Lee and

Dr..

ovich (for you LPCH people). So basically I have a rash all over my

body

which strangely resembles the systemic rash and the best thing is they have

no clue why I have a rash. It could be related to a flare in one of those

weird crossing JRA lines way, or it could be a virus who knows. But it was

also

noted that I have swelling and stiffness and my spine does not seem to be

responding as well to Enbrel so they are going to add Arava. I'm a little

worried about Arava just because what some of the side effects are hair loss

and

GI effects.. Plus it worries me is that they said if I want to get pregnant I

have to be off Arava for two years, obviously I'm not thinking of getting

pregnant right now but someday yes. The good thing is that I actually can't

start Arava right away anyway so I can think about it for a little while.

Due

to some recent GI problems (blood coming from a place where blood should not

come from) I am getting a sigmoidoscopy (like a colonoscopy but not as

extensive) so I have to wait till that comes back ok and the rash is gone

before I

start the new med. I'm not stopping Enbrel they just want to add a new med.

Plus they also want to check and make sure all my counts are good and find

out if I might possibly have IBD (so blood tests for that too). Apparently I

never got the HLA B27 genetic test either so I'm also getting that. So other

interesting news is that I finally understand the Poly JRA spondy dx..

Apparently when girls present with spondy symptoms but also present with

other

joint problems they are classified as Poly JRA. As they get older if the

symptoms presist and they start fitting the true Spondy category then it is

change

to a spondy with I think what she called extensive category? I dunno

basically

its like Spondy and JRA all mixed into one lovely dx. But it does make a

remission less likely was basically what I got from it. All in all though it

wasn't to bad I'm glad we are finally out of the lets see what will happen

with this and instead they are adding something.. its good I guess. Anyway

so

if anyone has any information on Arava I would really appreciate it. Sorry

this was so long..

Lots of Love

(Spondyish, 20)

[Guest guest]

:

Cute? Hmmmm...I asked him why we have to do THIS together? We are so much

alike sometimes it is spooky~

I hope that the Arava works well with your combination.

I so want you to know what it feels like to feel great, too!! Hope this

is the answer!!

By the way, that 50 mg Enbrel shot, despite its WONDERFUL effects on me,

really stinks. I called Enbrel and complained, and they actually have a

'script' that they read to you about the dullness of the needle and the

burning of the medication. If enough people complain, maybe they'll

change the formulation. They have to fill out an FDA report when you call

in and they ask for the lot number on the box of Enbrel you are currently

using.

, adult onset RA, mom to Rob, 15 Spondy

Rob just says he has arthritis. He doesn't like explaining what spondy

is!

, are you going to RI???

On Fri, 11 Mar 2005 23:43:00 EST bncknwurnumber@... writes:

So you on Rob are both on Enbrel? That's cute! in a weird arthritis

way..

lol. Hopefully weight loss and hair loss wont happen.. I have fine hair

to

begin with (and I have an odd shaped head so a bald or balding me just

wouldn't

be cute) and have already lost more weight then my doctors like.. but

whatever I'm willing to take the chance and see if it works. I feel ok,

but I want

to know what it feels like to feel great, if this could help then its

well

worth it, right? I'm hoping they get this GI stuff taken care of too,

its

frustrating to have one problem fixed and another problem pops up in its

place. I

guess that is the life of chronic illness.. Anyway how is Rob doing?

Lots of Love

(Sponyish.. because its sorta poly and its mostly spondy.. so its

now

spondyish, 20)

[Guest guest]

Today was actually a not so good arthritis day, which basically made me

decide I will go on the arava.. Anything that might affect my ability to have

kids kind of scares me, but its worth a try I guess. I have a sigmoidoscopy

(like a colonsocpy) on Friday and then my appointment will be soon after that.

I hope that Uncle Rusty wont have to get the open heart, but if he does

I hope that he recovers quickly. That very much sucks (I had to say it),

Uncle Rusty deserves to have some health thrown his way! He'll definitely be

in

my prayers, I'm glad Rob entertained him for awhile, the hospital can be a

borning place! Next time you talk to him send my love and prayers

Lots of Love

[Guest guest]

:

Rob is on the twice a week. He has about a 2 month supply of it left

before he'll have to go to the once a week dosing. When I complained

(yes, I'm a whiner) about the once a week shot, he offered to let me have

his 2x a week doses because he says they don't hurt much at all. Isn't he

sweet???

I'm glad to hear that Enbrel is working on it. Its bad enough to have

arthritis but when the manufacturer doesn't realize that they need to

make changes before sending something to market....thanks for the

information on that, it gives us hope!

I've found that ice makes it a bit better (the stick doesnt hurt) but

that burning going in...worse than any penicillin shot I ever had or any

IV stick, that's for sure.

I still dont' think I truly understand what Rob goes through, although I

have an idea. I can't imagine what its like to be in your teens and

dealing with this. I've learned so much from him.

We went to see Uncle Rusty tonight. Rob was bouncing off the walls and

entertained Rusty quite a bit.

He'll probably find out tomorrow if he is to have open heart surgery. He

has a feeling he might have to and so do I. I'm worried about him.

How are you doing tonight?? When is your next GI visit???

and Rob 15 Spondy

PS I'll have to put that rubber cap between my teeth the next time so I

don't whine so much!! Thanks for the tip LOLOLOL!!

On Sat, 12 Mar 2005 16:08:37 EST bncknwurnumber@... writes:

Weird, cute its all the same. At least he has someone to understand

what

its like. Its sometimes hard to explain to my parents what the pain

feels

like, so in a way its good that you two know exactly how the other

feels.. at the

same time its one of the more crapiest situations ever. Dr. ovich

(ped

rheumi fellow) said that Enbrel is aware of how bad it is and they are

working to make it better.. I thought I was doing something wrong with

the needle,

like pulling the cap off wrong making it dull.. guess not it really is

that

dull.. I'm glad someone else noticed that. I swear the whole reason

they made

a rubber cap was so when your getting the shot you have something to

bite

on. I refuse to go back to the two shots, I'm stubborn and determined

to make

it work. But luckily Enbrel knows and they are working on fixing the

shots..

I hope they fix it soon it hurts bad.. Is Rob on the once a week dosage

or

is he doing the two shots twice a week?

Lots of Love

[Guest guest]

;

That would be a very hard choice to make for sure!!

Love to you!!

and Rob 15 Spondy(ish)

On Sat, 12 Mar 2005 16:10:16 EST bncknwurnumber@... writes:

Oh and I'm not sure about RI, I just found out we are having a family

reunion.. hard choice though go see my JRA family or get to see some of

other

family.. hmm but we dont have an exact date for the reunion so I guess

we'll see.

Lots of Love

[Guest guest]

,

Sorry to hear that you are having such a tough time with the

arthritis and the colonoscopy doesn't sound good. See what I mean

about you...They are always wanting to shove some tube some where!

:-(

I hope the new med will work out for you. I know that it must be

scary to worry about your future fertility with all the meds you

have had to be on. Actually, this was something that really had me

concerned for Aundrea's future as well. My sister, that has

chrones disease ended up having to have a hysterectomy at age

19..That was such a difficult experience for her and it has made me

keep in mind that while I want a quality childhood for Aundrea I

also give plenty of thought as to what complications could occur in

the future in regards to our treatment plans for the present.

In the end, my sister adopted an absolutely beautiful baby boy this

year. He is the joy of her life and adored by all of us.

I am praying for you and trusting that this med is what you need for

now and that God will protect you from any harmful side effects.

Let us know how things go for you on Friday.

(aundrea 9 systemic)-

-- In , bncknwurnumber@a... wrote:

> Today was actually a not so good arthritis day, which basically

made me

> decide I will go on the arava.. Anything that might affect my

ability to have

> kids kind of scares me, but its worth a try I guess. I have a

sigmoidoscopy

> (like a colonsocpy) on Friday and then my appointment will be

soon after that.

> I hope that Uncle Rusty wont have to get the open heart, but

if he does

> I hope that he recovers quickly. That very much sucks (I had to

say it),

> Uncle Rusty deserves to have some health thrown his way! He'll

definitely be in

> my prayers, I'm glad Rob entertained him for awhile, the hospital

can be a

> borning place! Next time you talk to him send my love and prayers

>

> Lots of Love

>

>

>

>

[Guest guest]

Thank you so much for your everything you said, that really means a lot to

me. Knowing that I have the support from the message board really does make a

huge impact on my life and my ability to deal with this disease. I know

that I am one of many fighting this disease and when I think of all the kids on

this message board who are fighting this I know that I want to be a good role

model for every kid fighting it, because if I can show them that you can

have JRA and still lead a pretty normal life then I am giving them hope, and

really sometimes hope is the best medicine.

Lots of Love

(spondy, poly, 20)

[Guest guest]

,

Your knowledge, advocacy and maturity about all this at your age

continues to amaze me. You have so much going on and I just wanted

to say that there should be a whole lotta more people like you in

this world as you struggle with all your dx and treatment dilemmas

and all the considerations you have to take into account for your

future. You are truly one of the special people on this planet. My

thought and prayers are with you.

Stacia and Hunter 8 systemic iritis

> Today was my check up at my rheumi's and it went pretty good

actually. The

> weather in California has been amazing (80's) so the JRA has been

doing

> pretty good. Dr. Sanborge was not in the clinic today so I saw

Dr. Lee and Dr..

> ovich (for you LPCH people). So basically I have a rash all

over my body

> which strangely resembles the systemic rash and the best thing is

they have

> no clue why I have a rash. It could be related to a flare in one

of those

> weird crossing JRA lines way, or it could be a virus who knows.

But it was also

> noted that I have swelling and stiffness and my spine does not

seem to be

> responding as well to Enbrel so they are going to add Arava. I'm

a little

> worried about Arava just because what some of the side effects

are hair loss and

> GI effects.. Plus it worries me is that they said if I want to

get pregnant I

> have to be off Arava for two years, obviously I'm not thinking of

getting

> pregnant right now but someday yes. The good thing is that I

actually can't

> start Arava right away anyway so I can think about it for a

little while. Due

> to some recent GI problems (blood coming from a place where blood

should not

> come from) I am getting a sigmoidoscopy (like a colonoscopy but

not as

> extensive) so I have to wait till that comes back ok and the rash

is gone before I

> start the new med. I'm not stopping Enbrel they just want to add

a new med.

> Plus they also want to check and make sure all my counts are good

and find

> out if I might possibly have IBD (so blood tests for that too).

Apparently I

> never got the HLA B27 genetic test either so I'm also getting

that. So other

> interesting news is that I finally understand the Poly JRA spondy

dx..

> Apparently when girls present with spondy symptoms but also

present with other

> joint problems they are classified as Poly JRA. As they get

older if the

> symptoms presist and they start fitting the true Spondy category

then it is change

> to a spondy with I think what she called extensive category? I

dunno basically

> its like Spondy and JRA all mixed into one lovely dx. But it

does make a

> remission less likely was basically what I got from it. All in

all though it

> wasn't to bad I'm glad we are finally out of the lets see what

will happen

> with this and instead they are adding something.. its good I

guess. Anyway so

> if anyone has any information on Arava I would really appreciate

it. Sorry

> this was so long..

>

> Lots of Love

> (Spondyish, 20)

>

>

>

[Guest guest]

.. You rock girl.. You are a great advocate for all of our children and

yourself.. I hope is a strong as you are after many years of fighting

this disease..

Hugs to you,

Emilie

Re: Re: Update

Thank you so much for your everything you said, that really means a lot to

me. Knowing that I have the support from the message board really does make

a

huge impact on my life and my ability to deal with this disease. I know

that I am one of many fighting this disease and when I think of all the kids

on

this message board who are fighting this I know that I want to be a good role

model for every kid fighting it, because if I can show them that you can

have JRA and still lead a pretty normal life then I am giving them hope, and

really sometimes hope is the best medicine.

Lots of Love

(spondy, poly, 20)

[Guest guest]

I wanted to let you know you are in my thoughts. I hope they find out

what is going on and can get you fixed up there, girl!! You are a tough

and courageous person; a real inspiration. Hugs to you, Michele

Update

Today was my check up at my rheumi's and it went pretty good actually.

The

weather in California has been amazing (80's) so the JRA has been doing

pretty good. Dr. Sanborge was not in the clinic today so I saw Dr. Lee

and Dr..

ovich (for you LPCH people). So basically I have a rash all over

my body

which strangely resembles the systemic rash and the best thing is they

have

no clue why I have a rash. It could be related to a flare in one of

those

weird crossing JRA lines way, or it could be a virus who knows. But it

was also

noted that I have swelling and stiffness and my spine does not seem to

be

responding as well to Enbrel so they are going to add Arava. I'm a

little

worried about Arava just because what some of the side effects are hair

loss and

GI effects.. Plus it worries me is that they said if I want to get

pregnant I

have to be off Arava for two years, obviously I'm not thinking of

getting

pregnant right now but someday yes. The good thing is that I actually

can't

start Arava right away anyway so I can think about it for a little

while. Due

to some recent GI problems (blood coming from a place where blood

should not

come from) I am getting a sigmoidoscopy (like a colonoscopy but not as

extensive) so I have to wait till that comes back ok and the rash is

gone before I

start the new med. I'm not stopping Enbrel they just want to add a new

med.

Plus they also want to check and make sure all my counts are good and

find

out if I might possibly have IBD (so blood tests for that too).

Apparently I

never got the HLA B27 genetic test either so I'm also getting that. So

other

interesting news is that I finally understand the Poly JRA spondy dx..

Apparently when girls present with spondy symptoms but also present

with other

joint problems they are classified as Poly JRA. As they get older if

the

symptoms presist and they start fitting the true Spondy category then

it is change

to a spondy with I think what she called extensive category? I dunno

basically

its like Spondy and JRA all mixed into one lovely dx. But it does make

a

remission less likely was basically what I got from it. All in all

though it

wasn't to bad I'm glad we are finally out of the lets see what will

happen

with this and instead they are adding something.. its good I guess.

Anyway so

if anyone has any information on Arava I would really appreciate it.

Sorry

this was so long..

Lots of Love

(Spondyish, 20)

[Guest guest]

Whoo hoo,

I am just tickled to hear Nick is feeling so well.It's been a long time

coming and he definately deserves the break.

It just sickens me how schools always want to blame ADHD or ADD for

everything.We have been lucky with ,I have been questioning his teachers

since pre

k and they all say he's not the worse they have ever seen and he's just all

boy.Spaciest kid I have ever met though.

I hope Nick continues to feel wonderful and spends all summer in the pool.

Love and hugs

Becki and 6 systemic

[Guest guest]

--

Hi Helen,

I am so glad to hear that Nick is doing well!!! I didn't realize that

we have both been walking this jra journey for about two years. Some

days it seems so much longer, that I hardly remember how things were

before it came along!

Aundrea is also doing fairly well. You can read my little update

about her in my post to Alia.

I wonder how things will end up with the ADHD study. I would be

inclined to think that you will be right, after all its not like you

don't have some experience with this.

Sorry to hear your still feeling lousy. Just wear some cute pajamas

for the camera on your sleep over. lol

Take Care,

(Aundrea 9 systemic)

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

>

> Hi All,

>

> Thought I would drop a quick note to give a brief undate on little

> Nick...

>

> He is doing AMAZING!!!! we are now down to 2mg of prednisone daily

> with NO ill effects. Hes full of energy and has even started to stay

> after school for extended day ( extra help) hes been too tired for

> the last 2 years. he did drop out of Tae Kwon Do again as it was too

> much though.

>

> Nick is in the middle of a double blind study to see if he has ADHD.

> We have 2 medications marked Drug A and Drug B... he takes one for 2

> weeks and then the other one for 2 weeks. One of the drugs is ADHD

> medication and the other a placebo, but we dont know which is which.

> I have never thought hes ADHD ( I already have 2 kids that are) but

> its a big issue in school. Personally, I just think the teacher is

> at fault for not making school interesting enough. Im hoping that

> this study will prove to the school that hes NOT ADHD and we can

> move on from there. The problem with a lot of teachers these days,

> if they think a child is ADHD they cant seem to move past it until

> its been dealt with.

>

> Can you beleive also, that Nick is up before me in the mornings!!!

> this is the same kid that needed 12-15 hours sleep a night and was

> always tired and falling to sleep at school. IM so happy that hes

> feeling soo good. he is still having a little breakthough pain in

> his wrists, ankles and knees, but its very short lived and not

> bothering him to much. Once the ADHD study is over i will continue

> to taper the pred. I really dont want to mess with it while we are

> doing the study because if he flares it will screw everything up.

>

> So, just wanted to share my joy in having a happy, smiling, funny

> little Nick around here!! Its hard for me to beleive that this all

> start 2 years ago. This time 2 years ago he was not Dx yet and was

> soo sick. Such dark days!.

>

> hugs Helen and (7 1/2 systemic)