New to the Group

[Guest guest]

hi larry. i know what you are going though . i will soon be 48. and have R.A.

for 10 yrs. it's not easy being 48 and feeling 78. we just hang in there and

keep going . take it easy. ..... mike

bichondaddy1057 <bichondaddy1057@...> wrote:

Hi All...

Just want to introduce myself to everyone. My name is Larry and I

have severe osteoarthritis in both knees and RA in my hips. I am 47,

M/ living in the New Orleans Metro area. I just am hoping to find a

place to talk, my wife does not really seem to understand that I am

in pain 24-7/365, and it does get old hurting all the time.

Larry...

[Guest guest]

Hi Dan,

I don't know the " when " on natural T shutting down. A GUESS is 1-2 months.

Everyone's different, but you might see results drop off in a few weeks. There

are 2 reasons for this:

(1) now you are getting natural plus supplemental T, so your level has come

up. When natural T slows down your T will drop down again. The resulting

level might or might not be high enough for good results. If it isn't, a dosage

increase might be needed.

(2) Supplemental T converts to E2 (estradiol, an estrogen). Increased E2 can

negate the benefits of increased T.

It is important to get tested every 4-6 weeks until things are steady. These

follow-up tests should include T, free T & E2, at a minimum. Have you ever

had a full panel of male hormone tests?

Best,

Bruce

>

>

> Hello - I am new to the group and just started TRT. I am 46 and

> noticed for several years that my libido was deminishing. I was

> tested 2 years ago and my serum T was 225 Ng/Dl. This year it was

> 188. My urologist started me on androgel 5g. After about 10 days I

> could really tell a difference in multiple issues including libido.

> My question is can I expect my natural testosterone production to

> shut down completely and how long will it take. Also, what other

> side effects should I be watching out for. This forum has been really

> beneficial while I was trying to determine what was wrong with me.

>

> Thanks - Dan

[Guest guest]

Hi Guy there has been some that are using 6oxo but I have not heard anything

about it working. Have your E2 Estrodial checked and if it is high try taking

it for a month and get a new blood test to see if it works. Print out the links

on E2 in case your Uro will not test you for high E2.

Phil

Guy DelRegno <gdelregno@...> wrote:

Hi Phil,

Go to hear from you. I was going to put up my latest

news on the board. BTW thanks for the info, I'm sure

that is what my problem was after being on AG for the

initial 13 weeks. Once I went to the 10G, I had a hard

time getting an orgasm. In fact, my ejac volume went

to almost nothing. I went to my scheuled endo and she

reviewed my blood tests and MRI. She diagnosed me as

secondary, no tumor was found from my MRI. So my endo

is sending me to a Urologist tomorrow, and there is

talk of getting a HCG shot and puting me on patches

instead of the gel. To make a long story short, she

told me I have the Test levels of a 70 year old man.

It floored me, no wonder I haven't been right. Do you

hav any recommendations that I should take with me to

my uro appointment tomorrow ? One more thing Phil,

would taking 6oxo with my TRT help ? I happen to have

2 1/2 bottles of the stuff that will last me about 3

weeks. Would I see any results in that time if I used

it ?

Thanks again, Guy

--- philip georgian <pmgamer18@...> wrote:

> Hi Guy yes your Dr. is right it is a side effect of

> using T. But to tell you not to worry about it is

> wrong. What is causing this is high E2 Estradiol.

> Left untreated can make you very sick fatigue, ED,

> trouble reaching an orgasm, loss of libido, feelings

> of panic, skin rashes, sweating all day long and

> pain in you prostrate with slow voiding. A lot of

> Dr.'s don't know about this and tell you it is from

> TRT. Yet Dr. that do know about this test it first

> and if they find a man has low T and high E2 will

> treat the E2 first because if you can get the E2

> down you T levels will go up by there self. Here

> are some links.

>

http://www.medibolics.com/ArimidexBoostsTestosterone.htm

> http://www.smart-drugs.com/ias-estrogen.htm

>

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=pubmed & dopt=Abstra\

ct & list_uids=15001605 & itool=iconabstr

> http://www.lef.org/protocols/prtcl-130.shtml#too

> For starters you can try some Zinc with Copper.

> http://www.myvitanet.com/zincop100cnt.html

> And if you can get your Dr. to test it and it comes

> beck high you can try this it is over the counter.

> http://www.ritecare.com/prodsheets/PHY-15336.html

> It should be this kind there are a lot of DIM's on

> the market and this one is working for some of the

> men.

> Phil

>

>

> Guy DelRegno <gdelregno@...> wrote: Hey Dan,

>

> Welcome to the group. I am 57 and have been on

> Androgel 10g for about 4 months now. I did notice a

> sexual rush for about 10 days, after first starting.

>

> But, I also started noticing my nipples started a

> slight tingling every so often and were a little

> sensitive. After about 6 weeks, I did notice the

> beginning of testicle atrophy. Don't be alarmed my

> doctor told me these were side effects of the test

> gel.

>

> Hope this helps. Guy

> --- dmeatheany <dmeatheany@...> wrote:

>

> >

> >

> > Hello - I am new to the group and just started

> TRT.

> > I am 46 and

> > noticed for several years that my libido was

> > deminishing. I was

> > tested 2 years ago and my serum T was 225 Ng/Dl.

> > This year it was

> > 188. My urologist started me on androgel 5g. After

> > about 10 days I

> > could really tell a difference in multiple issues

> > including libido.

> > My question is can I expect my natural

> testosterone

> > production to

> > shut down completely and how long will it take.

> > Also, what other

> > side effects should I be watching out for. This

> > forum has been really

> > beneficial while I was trying to determine what

> was

> > wrong with me.

> >

> > Thanks - Dan

> >

> >

> >

> >

> >

> >

> >

>

>

> =====

>

>

> test'; " >

>

>

>

> __________________________________

> Do you ?

> - now with 250MB free storage. Learn

> more.

> http://info.mail./mail_250

>

>

[Guest guest]

Hi Dan,

AACE guidelines say 3-4 months for follow-up, so you uro is by-the-book on

that. I'd prefer lab tests every 1-1/2 mos. until things got stable. If you feel

improvements falling off or your nipples get sensitive, call him & get tested.

Bruce

>

> Hi Dan,

>

> I don't know the " when " on natural T shutting down. A GUESS is 1-2 months.

>

> Everyone's different, but you might see results drop off in a few weeks.

There

> are 2 reasons for this:

> (1) now you are getting natural plus supplemental T, so your level has come

> up. When natural T slows down your T will drop down again. The resulting

> level might or might not be high enough for good results. If it isn't, a

dosage

> increase might be needed.

> (2) Supplemental T converts to E2 (estradiol, an estrogen). Increased E2

can

> negate the benefits of increased T.

>

> It is important to get tested every 4-6 weeks until things are steady. These

> follow-up tests should include T, free T & E2, at a minimum. Have you ever

> had a full panel of male hormone tests?

>

> Best,

> Bruce

[Guest guest]

Hi Kristan,

Welcome to our friendly helpful group. I am glad you found us.

>

> my name is kristan and i just joined this group

> yesterday. i have been suffering for about 3 years

> from what i believe is a yeast overgrowth problem (my

> numbers are off the charts with Dr. Crooks test). my

> main symptoms are fatigue, headaches and vaginitis.

Kristan, please see the article I wrote on " How to Treat Vaginal

Yeast " in our files on the left side-bar. Also, if you haven't read

my main article " How to Successfully Overcome Candida " please do

since the diet recommended is excellent, and is very different from

what others recommend, and diet is the most important factor in

getting well.

>i haven't had any luck with medical doctors about my

> condition. i am usually given one diflucan pill and

> dismissed or worse they attempt to treat me with

> antibiotics and steroids. first off, i was wondering

> if anyone in the group is from the chicago area that

> could recommend a doctor for me. i would like to have

> some tests done to verify my condition before i launch

> into the candida control program.

There are no reliable medical tests for candida because yeast is a

normal habitant in all our bodies and everyone has antibodies against

yeast even if they don't have yeast overgrowth. The best test is the

Yeast Questionnaire which is in my article " How to Successfully

Overcome Candida " .

There is an excellent doctor in the Chicago area, Dr. ph

Mercola. His website is www.mercola.com

> my other main concern is that i happen to be a pretty

> thin person and have been all my life. i only weigh

> about 105 lbs despite attempts to gain weight. i am

> fearful that eliminating carbs and other things from

> my diet will reduce my weight further. i actually did

> the candida control diet for about 3 weeks but started

> dropping weight and feeling extremely light-headed so

> i stopped.

If you have candida weight is the least of your problems. My story on

how I got candida back in the 1980s is in the files too. At one

point in time I was losing 3 lbs. a day but I persisted on the

Candida Program and my weight normalized again. The light-headedness

you felt is typical of yeast die-off symptoms and is a sign the yeast

is being killed. Again the candida control diet may be very

different from what I recommend. My recommended diet contains high

protein, high " good " fats (described in my article) and low carbs.

High carb foods feed candida. At one point in my candida program I

could only eat 9 foods in the whole world which were all very very

low carb foods.

> i have decided to spend the month of december

> researching candida so that i will be prepared to

> start the candida control program in january. if any

> one could send me helpful hints or your favorite

> recipes (i often feel like there is little left that

> is positive to eat with candida) i would truly

> appreciate it. i am so glad to find a group of folks

> to talk to about this.

We have many good recipes in our Files (left side-bar) to help you.

We all understand how difficult it is to change your diet, but it

will be an adventure in finding the many delicious healthful foods

that are available - there are many! Hopefully you wouldn't want to

return to a Standard American Diet (SAD) that contributes to your

illness and keeps you unhealthy. The food industry has done quite a

number on North Americans with it high carb and processed foods,

additives, preservatives, etc. The basis of my diet is whole

nutrient-rich " real " foods that was consumed more than 60 years ago

(traditional diet), before cancer and heart disease became rampant.

It is important to take the time required to get every aspect of the

diet " down pat. " It will serve you well in the end because your new

eating habits will keep you healthy for the rest of your life.

I wish you the very best and look forward to hearing how you are

progressing. Please do not hesitate to post any questions you have,

no matter how small they may seem. If you feel there are things you

don't want to air in this group please email me directly

beewilder@... - I would be happy to help you. Our goal is that

you become well and enjoy life-long health and happiness.

Again, welcome to our group Kristan!

Luv,

Bee

[Guest guest]

Hi Kristan.

I had some difficulties when I first went on the candida elimination diet

back in May. I was experiencing faster weight loss (I've been losing weight

steadily for over a year now due to my gastric problems), and getting

frequent episodes of dizziness and that light-headed feeling in addition to

the brain fog and other head/throat symptoms I had due to candida.

After some experimenting, I learned that because the carbs are reduced since

I stopped eating starches, I needed to:

1. eat frequently -- I eat something every 2 to 3 hours

2. increase my oils and fats - I use olive oil much more liberally when I

cook and have it as a dressing on vegetables at least once a day. Coconut

oil is also good. And I use butter more often as well.

Within 2 weeks of following these steps, my weight loss slowed down, and I

stopped getting dizzy throughout the day. My candida levels are slowly

reducing as well, so I can now eat medium-carb veggies more often, which

helps too. I eat a lot of green beans, which have a decent amount of carbs

and help with energy levels.

Sometimes you have to experiment a bit to figure out what will work.

Kim M.

>i only weigh

>about 105 lbs despite attempts to gain weight. i am

>fearful that eliminating carbs and other things from

>my diet will reduce my weight further. i actually did

>the candida control diet for about 3 weeks but started

>dropping weight and feeling extremely light-headed so

>i stopped.

[Guest guest]

> After some experimenting, I learned that because the carbs are reduced

since

> I stopped eating starches, I needed to:

> 1. eat frequently -- I eat something every 2 to 3 hours

> 2. increase my oils and fats - I use olive oil much more liberally when

I

> cook and have it as a dressing on vegetables at least once a day. Coconut

> oil is also good. And I use butter more often as well.

I found the same problem and the same solution just recently. Also look at

hemp and flax oil, both have a lot of healthy fats in them. I recently

discovered cashew butter with flax oil (and a little sea salt and stevia),

it tastes so good I couldn't believe it, and packed full of nutrition and

" good " calories.

[Guest guest]

" Far Beyond Average " wrote:

>Also look at hemp and flax oil, both have a lot of healthy fats in

>them. I recently discovered cashew butter with flax oil (and a

>little sea salt and stevia), it tastes so good I couldn't believe

>it, and packed full of nutrition and " good " calories.

FYI. I would caution anyone about using very much hemp and flax

oils. They contain a form of Omega 3s that requires conversion by

the body. In addition they go rancid very easily, even when

refrigerated, and they shouldn't be used for cooking. Personally

I'd only use these oils for mixing in my oil paints. If you want

flax oil it is better to grind your own flax seeds.

The ideal form of Omega 3s is in cod liver oil which doesn't require

conversion by the body, and it also contains Vitamins A & D - three

products in one.

Extra virgin olive oil is good for putting on weight and is very good

for making salad dressings.

Bee

[Guest guest]

Beverly,

You are a great mom to try to investigate beyond what the doctors

have told you. Your story sounds very familiar to me and probably

others here.

So it's been five years and still no real specific diagnosis or long

term treatment plan? (Periodic fever syndrome sounds to me like a

non-specific diagnosis that they are watching to see what the

underlying cause is over time???) Prednisone is not a long term

treatment plan for most diseases, but merely a bandaid. It may

actually hinder a diagnosis because it masks the inflammation. Has

he been presciribed any NSAID like naprosyn on a daily basis? How

long ago did his legs start hurting?

What specialists is he seeing? A pediatric rheumatologist? A

pediatric ophthalmologist? Infectious disease or oncology? Not all

or even most joint swelling is visible to the layman's eye. I have

never seen visible swelling in my son's joints.

My son, Hunter, went 4 years before he was diagnosed with systemic

onset JRA. His symptoms started when he was 3 and he is now 8. I

won't bore you with the sordid details, however, we also were seeing

pediatric specialist after pediatric specialist to no avail. There

is not a JRA test that can be given. It is process of elimination

of all the other diseases and conditions.

To my point of long period before diagnosis...when you wait 2-4

months to get into the specialists, my son would be having a " good "

day by the time we saw any of the docs. The docs. never got to see

the disease flaring in action, therefore, it didn't exist. We were

just told to take daily naprosyn, which seemed OK for a while. But

I was super frustrated with not understanding why we needed to do

this and had no clear path to follow. It was like purgatory.

His sypmtoms were frequent 106 fevers that would last for a week to

a month. Swollen liver and spleen and sometimes lymph nodes upon

examination. Occasional joint pain, but not enough to be regular or

debilitating and able to track it. Intense fatigue, especially

compared to other kids just playing on the playground. GI and tummy

problems. Rashes, which we always thought were hives because we

didn't know about systemic JRA symptoms and we could never track

them to anything different than the day before as far as diet or

anything he was ever exposed to. Ultimately, the other shoe dropped

in 8/03 and joint pain became excruciating to the point he couldn't

walk, just overnight. We, fortunately, had a new ped. rheumy appt

scheduled for a few days later. This new doc. got to see the real

thing in his office and we had our answer in 5 minutes.

The moral of the story is that just because you are seeing doctors,

doesn't mean you will get answers in all cases.

Tell us more about your doctors, what they have said, and if he has

had any joint pain during a physical examination.

I will add that it is unusual to be seeing doctors and go for so

long without a " real diagnosis " for JRA, but it can happen. My

memory of people on this list is that most have gotten diagnoses

within a year or so, some very quickly, but there are definitely

those who's situation lingered on without actual answers for quite a

while.

There are others here also who go to Lucile Packard at Stanford in

the pediatric rheumy dept. I'm sure they'll chime in also and give

you specific direction at the local level.

Keep searching and being an advocate for you child's health. I hope

you find the right direction very soon.

Stacia and Hunter 8 systemic, iritis

[Guest guest]

Hello Beverly, I'm known as Rusty or as I like to call my self, 'Rusty

O'Limbs' I was diagnosed at 13 yrs. but back then never need the phrases,

pauci, poly or systemic.

Many of the symptoms that your son Shane have experienced are much like

those I too have experienced in my life.

extreme light sensitivity, fevers, though I don't remember a lot of

rashes. But then I was never a kid to let anyone fuss over me.

Foot, knee, hips pain and have always had joint swelling. Stomach

irritation, mostly due to medications.

With all the symptoms of my very first flare, today I would be classified

as systemic, of that I am quite certain.

You are at the right site for advise, information and LOTS of

understanding shoulders to lean on. And I'll offer a creeky boney

shoulder for the leaning too. and an ear as well.

Many prayers! for you and your family.

Rusty O'Limbs

[Guest guest]

Beverly - just had to add my two cents. If your child has systemic JRA -

usually the RF test and ANA test are negative. But not always - our Hunter

tested postive with ANA. Your child's symptoms sound so familiar - I was

concerned about the use of predisone and the dosage that you mentioned - talk

with

your ped rheumy about that. Good luck and I hope your son get the right

diagnosis soon (That is half the battle) Sandi Ken and Hunter (6Systemic)

[Guest guest]

Beverly - I hope I did not hurt your feelings about my comments on the

Prednisone. Just yesterday we had to increase Hunter's prednisone dosage due to

a

flare. I am truly sorry that your child and your family has gone so long

without a diagnosis. A woman I met at the last Arthritis Foundation Fundraiser

has a son who is being treated at the National Institute for Health. They have

worked wonders in her families life. She is not member of our group - but is

extremely knowledgeable of Fevers of unknown origin - that being one of her

son's symptoms. Only with your permission and hers I could give you each

others email addresses. Let me know. Sandi Ken Hunter (6 Systemic)

[Guest guest]

>There

> is not a JRA test that can be given. It is process of elimination

> of all the other diseases and conditions.

I don't understand JRA well enough I'm sure, but in my daughter's

case once they rulled out some sort of physical injury the

pediatrician asked for a blood test and he called me back a few days

later saying it was JRA and to go see a pediatric rhumatologist ASAP.

From the day she started to limp until official diagnosis it was

maybe one month at most.

They could tell quite a bit from her blood tests. Apparently she

doesn't have markers for adult onset arthritis, whatever those are. I

was told her JRA looked like pauci (ANA positive), but it could

evolve into some other form of JRA the first 6 months after

diagnosis. She's probably had it that long by now so I hope we're OK,

but I'm on the lookout for fevers or anything strange.

We're off to the rhumatologist for a follow-up visit today. I'm sure

he'll ask for another blood test, poor sweetheart, she's going to be

upset...

Annie & nne, 6yo, pauci

[Guest guest]

HI Beverly.

I would start to keep an diary of all your sons problems.. document

times and duration of fevers, takes pics of rashes. Journal when he

complains of any pain and where it is...then get into see a ped

Rhuemy, its very possible he might have systemic JRA..

Good luck and let us know what you find out..

Hugs Helen and (7,systemic)

>

>

> Hello,

>

> My name is Beverly, and I have a son who is 7 and has been

diagnosed

> at 2 at the Shriner's hospital as having (periodic fever

> syndrome). Well, his symptoms are changing. This April he

started

> getting rashes. They usually show up after his fever. He has

also

> complained during some of his fever episodes of having

excruciating

> eye pain (photophobia) severe headaches, and bad stomachaches.

When

> he is well, he complains that his knees, legs hurt. The other day

> when I hugged him, he cried out in pain. When he complains of his

> knees, feet, legs, etc. hurting, I don't seeing swelling. Only

> recently did I see swelling briefly behind his knee and a month

> later his wrist had a nodule sticking out. It was hot and red.

It

> was gone the next morning.

>

> Shane has always had a very sensitive immune system. When he

would

> get a mosquito bite, it would get very swollen, hot and red. I

> noticed that other people on this website have experienced the

same

> thing with bug bites.

>

> SO . . . . what do you guys think?? Could my son have systemic

> JRA? He doesn't have a low grade fever all the time. When he

gets

> his fevers it usually gets as high as 105°F. It's very hard for

him

> to walk. He throws up, hurts all over and can hardly function.

We

> were told to give him prednisone when his fever is at it's highest

> and Shane is at his worst. Once Shane is really sick, we give him

2

> tsp. of prednisone and within hours his symptoms are all gone. He

> is usually well for 3-4 weeks, then he gets sick again. During

his

> well time, he still complains that his legs, feet, knees hurt.

ALso

> when he is asleep he cries out in pain, again, saying that his

legs,

> arm, etc. hurts.

>

> Also, Shane has been seeing specialist since he was two. He

started

> getting sick when he was 3 months old. He is now seeing a doctor

at

> Stanford and UC San Francisco. I think we have a long road ahead

of

> us. I know that JRA is very difficult to diagnose, and Shane has

> been tested for the rheumatology blood work but it has always come

> back negative. Could he still have JRA?

>

> Any information or help would be greatly appreciated.

>

> Thank you.

>

> Beverly

> Roseville, CA

> mom to Nick (10), Shane (7) and Madalyn 5)

[Guest guest]

Hey Beverly, Glad you came here.........I am here tooo!!!

Jay

Mom to

Mathieu

[Guest guest]

Hi Jay,

I'm glad to hear from you. Maybe we'll find some answers for our children.

Take care.

Beverly

RE: Re: New to the group

Hey Beverly, Glad you came here.........I am here tooo!!!

Jay

Mom to

Mathieu

[Guest guest]

Yes, the RF and ANA tests have always come back negative. Without the

prednisone, his fever and his illness will last for a week. But you're right.

I know the prednisone could be masking something . . it's so hard to watch him

curl up and moan in pain for a long period of time. I do want to get to the

bottom of what he has.

Beverly

Re: New to the group

Beverly - just had to add my two cents. If your child has systemic JRA -

usually the RF test and ANA test are negative. But not always - our Hunter

tested postive with ANA. Your child's symptoms sound so familiar - I was

concerned about the use of predisone and the dosage that you mentioned - talk

with

your ped rheumy about that. Good luck and I hope your son get the right

diagnosis soon (That is half the battle) Sandi Ken and Hunter (6Systemic)

[Guest guest]

Hi Sandi,

In no way did you hurt my feelings. I appreciated your concern. We were told

to hold off the next time Shane gets sick because he usually gets his rash right

after his fever episode. The dermatologist wants to get a good sample and the

pred will mess up the results. Please don't feel bad. I know that we all are

doing everything that we can to try to help our children, and I would rather

have someone tell me their true concerns that not. Communication is the key to

finding the right help.

If your friend would like to email me that's fine. My email is

bdettis@.... Thanks for your help.

Beverly

Mom to Nick (10), Shane (7), and Madalyn (5)

Re: New to the group

Beverly - I hope I did not hurt your feelings about my comments on the

Prednisone. Just yesterday we had to increase Hunter's prednisone dosage due

to a

flare. I am truly sorry that your child and your family has gone so long

without a diagnosis. A woman I met at the last Arthritis Foundation

Fundraiser

has a son who is being treated at the National Institute for Health. They

have

worked wonders in her families life. She is not member of our group - but is

extremely knowledgeable of Fevers of unknown origin - that being one of her

son's symptoms. Only with your permission and hers I could give you each

others email addresses. Let me know. Sandi Ken Hunter (6 Systemic)

[Guest guest]

Hi Summer,

Welcome to the list and glad you found us.

The first week in March is Juvenile arthritis awarenes week and most AF

chapters do something for the kids.It would be a good way for Gabi to meet other

youngsters with arthritis.If you don't know how to contact your local chapter go

to www.arthritis.org and you can get all the info from there.

Gabi will meet all kinds of kids at AJAO and will forever know she is not

alone.You all will LOVE it!!!

Sorry she doesn't like the shots and still cries.Are they helping though?

Hugs

Becki and 6systemic

[Guest guest]

In a message dated 1/5/05 10:13:12 AM Central Standard Time,

h.skidmore@... writes:

> Summer..

>

> Welcome to an awesome group of people. I really think that you will find

> this group encouraging. My daughter is 5 and has poly JRA for 3 years now.

She

> is also on the enbrel and methotrexate cocktail. also has trouble

> believing that there are other kids out there with JRA too at times. What

> joints does Gabi have that are affected? Don't feel alone, there are alot of

us

> out here that you can talk to. Where are you located?

> Welcome to the group,

> Emilie ( 5 Poly)

Hi,

My daughter, It-xetl, was diagnosed with poly jra. She was diagnosed in May

2003 after months of unexplained fevers, pain throughout her body, the loss of

being able to grasp a glass, and the ability to walk. It was real scary.

Thanks to her medication she is doing well. The best thing to do is go to a

conference. In June 2003 I went to Jambalaya Jubilee in Shreveport,

Louisiana. I got so much information from the doctors that participate and

other

parents, but most importantly my daughter got to see, bowl, talk, play, swim, do

arts and crafts, eat, etc.. with so many other children with jra.

Last year we once again attended Jambalaya Jubilee and encouraged her to talk

more about the medicines she was taking to other kids. She learned that she

was not alone in all the labworks done, Enbrel shots, methotrexate pills for

Friday night. I was trying to get her to accept the fact that she could get

the Enbrel shot in her stomach and legs. She is still scared and still prefers

them in the underarm.

We have received a letter from Dr. Pressley that Jambalaya Jubilee will be

around mid June. My three daughters are already thinking of the things they

will do and about that ice cream social.

o Salas

[Guest guest]

Hello Summer. We welcome you and Gabi to the list. I can't even imagine what

it must feel like for these kids. It's hard enough being a kid, much less

one that has JRA. Please let Gabi know she is not alone. There are over

300,000 kids afflicted with this miserable disease. I am soo glad to hear

you are going to AJAO. It's a wonderful experience. One I would not trade

for the world. It is there that Gabi will realize she really isn't alone.

She will get the opportunity to meet kids her own age experiencing the same

things she is.

Where do you live? In march your local chapter should also have something

else going on. In Minnesota we have a JAM (Juvenile Arthritis March) that is

great for the kids.

Check with your local chapter or let us know where you live and we can find

out some information for you.

Alia and Caroline, age 2, poly and uveitis

new to the group

Hello all!

I am new to the group and would like to introduce myself and my

daughter. My name is Summer and my daughter is Gabi. She is 7 with

poly jra. She was diagnosed about a year and half ago. We are

still learning so much about her jra. She has a hard time dealing

with it all. She has never met another child with jra and has a

hard time believing me that she is not the only one. We are

planning on going to the conference in Rhode Island in July. Her

current meds are methotrexate and enbrel. She's been taking the

injections since nearly the beginning of her diagnosis and still

sheds many tears each time. Anyway I am so thankful that I found

this group. I sometimes feel so isolated and frustrated. I look

forward to getting to know you guys.

Summer-Gabi

[Guest guest]

Summer..

Welcome to a awesome group of people. I really think that you will find this

group encouraging. My daughter is 5 and has poly JRA for 3 years now. She is

also on the enbrel and methotrexate cocktail. also has trouble believing

that there are other kids out there with JRA too at times. What joints does

Gabi have that are affected? Don't feel alone, there are alot of us out here

that you can talk to. Where are you located?

Welcome to the group,

Emilie ( 5 Poly)

new to the group

Hello all!

I am new to the group and would like to introduce myself and my

daughter. My name is Summer and my daughter is Gabi. She is 7 with

poly jra. She was diagnosed about a year and half ago. We are

still learning so much about her jra. She has a hard time dealing

with it all. She has never met another child with jra and has a

hard time believing me that she is not the only one. We are

planning on going to the conference in Rhode Island in July. Her

current meds are methotrexate and enbrel. She's been taking the

injections since nearly the beginning of her diagnosis and still

sheds many tears each time. Anyway I am so thankful that I found

this group. I sometimes feel so isolated and frustrated. I look

forward to getting to know you guys.

Summer-Gabi

[Guest guest]

I never met another arthritis kid till I was 19 or so I thought. I found

out that one of the kids I use to go to school with also had arthritis we just

never knew that both of us were fighting it. Same school same dx even the

same type. But up until 19 I really felt so alone I had never met anyone my

age who had arthritis and then I met this girl Karla at the JA Day put on by

UCSF and everything changed. I started feeling normal again. I use to call

JRA my disease.. because I felt literally like no one really knew what the heck

I was talking about and I was the only one. I hadn't even realized that I

had changed that till the other day, when I tell people about JA, I tell them

about the disease that affects me and many other kids. I guess meeting those

kids really changed the way I saw even my fight against it. Its funny cause

like two weeks after that i found out that a kid from my second grade class

also had Poly JRA. I was never really as alone as I thought.

Poly JRA and JSPA, 20

[Guest guest]

-Welcome Summer and Gabi...

You have found the most wonderfully supportive group... I hope you

will feel welcomed here.

I feel so much for Gabi.. my son Nick thought the same until we

participated in the Minnesota JAM last March and once he saw all the

other kids with JRA there he felt so much better. He too was having

a problem with being different and on his own.

He cannot wait till this years walk and keeps talking about it. Im

also going to try and get us both out to RI for the national

conference this summer...I think its important for both of us.

Anyhows, tell us know about Gabi....we would love to get to know her

more!!

Hugs Helen and (7,systemic)

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

>

>

> Hello all!

> I am new to the group and would like to introduce myself and my

> daughter. My name is Summer and my daughter is Gabi. She is 7

with

> poly jra. She was diagnosed about a year and half ago. We are

> still learning so much about her jra. She has a hard time dealing

> with it all. She has never met another child with jra and has a

> hard time believing me that she is not the only one. We are

> planning on going to the conference in Rhode Island in July. Her

> current meds are methotrexate and enbrel. She's been taking the

> injections since nearly the beginning of her diagnosis and still

> sheds many tears each time. Anyway I am so thankful that I found

> this group. I sometimes feel so isolated and frustrated. I look

> forward to getting to know you guys.

> Summer-Gabi

[Guest guest]

Welcome to the group my Daughter Aubrey was diagnosed about a year ago and still

no one in her school for over five years had it no one in the school she has

never met any other kids her age with JRA she has PAUCi and very severe IRitis.

Aubrey is on Oral Metx and pred forte as needed for eyes. Welcome to the room if

your daughter would like to chat via email to my daughter That would be fine. My

daughter is 8 years she would love to talk with another child with Jra. Feel

free my email addy is listed below

TerriBer@...

new to the group

Hello all!

I am new to the group and would like to introduce myself and my

daughter. My name is Summer and my daughter is Gabi. She is 7 with

poly jra. She was diagnosed about a year and half ago. We are

still learning so much about her jra. She has a hard time dealing

with it all. She has never met another child with jra and has a

hard time believing me that she is not the only one. We are

planning on going to the conference in Rhode Island in July. Her

current meds are methotrexate and enbrel. She's been taking the

injections since nearly the beginning of her diagnosis and still

sheds many tears each time. Anyway I am so thankful that I found

this group. I sometimes feel so isolated and frustrated. I look

forward to getting to know you guys.

Summer-Gabi