New member

Posted March 29, 2005 · March 29, 2005

Hi there! I have a 3 year old that was just dx with pauci also about 2

months ago, so we're very new to this as well. I'm guessing you must be

somewhere

in NC (since you said Chapel Hill.) I'm wondering if you saw the post the

other day with a compiled list of pediatric rheumatology docs all over the

states? wondering if you could find a good doctor through there? Good luck to

you

and your daughter and we'll keep in touch as we both learn!!! Welcome!

Colorado

mom to Lexi, 3 with pauci

Posted March 29, 2005 · March 29, 2005

Hi ,

Welcome to the compassionate group (don't get scared off by the last

couple days of ridiculous posting -- I've been on this over a year

and have NEVER before read so much disrespect by an individual).

I have learned so much about labs, meds, treatments, schooling, etc.

and there are a lot of very knowledgeable people here on many

aspects of JRA.

There are many websites to help you with general stuff on the

disease, meds, treatments like all the links Georgina has on her

page, the Arthritis Foundation, uveitis.org, etc.

Are you seeing a Pediatric rheumy? If not, that would be key. Are

you keeping a daily journal of aches, pains, complaints, meds,

etc.? Most of us here do. That way, a lot of the fuzziness goes

away when you finally are with the rheumy and you're not trying to

remember things and having them all run together. Whenever you

think of a question, write it in your journal so you remember to ask

the rheumy.

If you're not satisfied with the rheumy you have, by all means look

for another. You need to have the personal level in a relationship

that suits you, which may be a very different need from someone else.

A good book is one by a Dr. Lehman that several people here have and

refer to. Maybe they can chime in with the name again. At the

beginning, I read a book from the AF called Raising a Child with

Arthritis. It touches on a wide variety of subjects in addition to

JRA and gives good advice on how to deal with it as a family,

doctors, schooling.

Stacia and Hunter 8 systemic, iritis

Posted March 29, 2005 · March 29, 2005

Hi ,

I am sorry to hear of your bad experiences with your

rheumatologist. Dealing with our sick kids is tough enough, we

don't need uncompassionate health care professionals. Even if your

rheumatologist is supposed to be the best in the world, if you are

not happy, find another doctor!

We are extremely happy with our rheumatologist and we still went for

a second opinion. This is just too important to not be 110% sure you

are doing the right thing. Good news for us he confirmed that our

rheumatologist is doing the right thing. There are lots of great

new drugs out there but some have scary potential side effects.

Find a PEDIATRIC rheumatologist that knows JRA well and can help

educate you to the available drugs along with the down sides to

each. Make sure he/she is also willing to do what it takes to get

our kids out of pain and working towards remission... that is the

goal for everyone here!

If the treatment you are getting isn't working, find someone who

will do something that will work. There is also fairly new research

(2004) stating that with young kids, if treated agressively in the

early stages of the disease, there is a higher liklihood of getting

to remission.

I hope you find the right doctor and treatment soon. Don't take no

for an answer, keep pushing until you get the results you want and

are 100% satisfied, even if it means traveling to another doctor in

another city.

Brad

(Kate 3 poly)

>

> My 2 yr old daughter was diagnosed with JRA in January of this

year.

> It started out in her left knee, but is now in her right knee and

> ankle. They have diagnosed her for the time being with

> pauciauticular. She had steroid injections done on Feb 6 and

thought

> that would make a dramatic difference, it did for about 4 days and

> since then it has gone into her ankle. she takes advil 4 times a

> day, the most she can have in a 24 hr period. Her rheumatologist

is

> hard to get anything out of and had not scheduled any physical

> therapy and when i kept reading about how important that was i

> phoned him and had to speak with his nurse. she told me well that

> can be set up with her pediatrician. she also said she was under

the

> impression that she was seeing the physical therapist when she

goes

> to Chapel Hill. I am very upset about all this happening to my

once

> happy, healthy little girl. I am confused about where to turn and

> what to do. I am fixing to have them refer her to Duke for a

second

> opinion and to see if i can see someone who is more helpful in

> educating me on this. i have tried to do research and have found

> some helpful things, but i have lots of questions that should have

> been answered already. Her present rheumatologist seems to have no

> interest and acts like it is no big deal. well it is a very big

deal

> to me especially with her being so young and her sight can be

> affected as well. I would appreciate any help and information any

> one can provide for me. I am also trying to find a support group

in

> our area.I know have been long winded in writing this, but i need

> all the help i can get!

> Thanks to all who can help

>

Posted June 8, 2005 · June 8, 2005

Hi Angel,

welcome to the group. Im Kathy and I am on the same meds as you, though I have

no problems,

except loss stools, with the imuran, though my dose is only 150 a day..I am sure

he will

increase it though.

I sure hope you get to feeling better soon. Let us know what your blood work

says..=)

...· ´¨¨)) -:¦:-

¸.·´ .·´¨¨)) Take Care,

((¸¸.·´ .·´ Kathy -:¦:-

-:¦:- ((¸¸.·´*

May your troubles be less, your blessings more, and nothing but happiness comes

through your

door!

§«¤»¥«¤»«¤»¥«¤»§«¤»¥«¤»«¤»¥«¤»§«¤»¥«¤»«¤»¥«¤»§«¤»¥«¤»«¤»¥«¤»§

Our loved ones never truly leave us...they live on in the kindness they showed,

the love

they gave, and the memories we have of them.

~~~~~~~~~~~~~~~~~~~~~~~~~

KeeslerAFBRelocationAssistance-subscribe

http://kmsavelio.tripod.com/chinookwindssiberianhuskies

SiberianHuskyDogBreeders-subscribe

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On Wed, 08 Jun 2005 04:26 , 'Connie' <angel34@...> sent:

>

>Hi, I was newly diagnosed with AIH in March. I am currently on

>

>Prednison 15mg, and was on Imuran 250mg although it started making me

>

>very sick so I stoped it. My liver test were doing great, were back

>

>to normal and then they started going up again. I have blood taken

>

>again Thursday and hope they are better. I am not sure how much

>

>damage was done to my liver, the Doc said I would have to wait a year

>

>for another biopsy to see how much scarring there is. I do have some

>

>pain in my right side but it is not bad. I do have alot of fatigue, so

>

>am unable to work at this time. I also am a diebetic so am on

>

>insilin, ya all know what prednison does to blood sugars. I also have

>

>nausea through out the day. I have found some chat rooms for AIH but

>

>no one is ever in them. I am open to all replys and hope I can find

>

>someone to talk to. angel

>

Posted June 8, 2005 · June 8, 2005

Hi Angel,

I was dx with AIH in May of 2002, gosh it is hard to believe it has been 3 years already. I started out on 20 mg of Predisone then had blood work in a week to see where my levels were. They went from the high 1000's down to the mid 100's. Then I started on the Imuran 50 mg. I have since been increase to 150 mg. I have been on and off Predisone numerous times. It seems after I wean off the Predisone my levels increase within a few months. I am presently weaning off the Predisone again . My doctor doesn't want to increase my Imuran any higher as she says the chances of side effects will increase dramatically. I have learned from this group that the Imuran is some what based on your weight and in that case I think I could go on a much larger dose especially if it lowers my levels and keeps me off the predisone. As far as any side effects I have had only weight gain and the round chubby face, but then I already had both those problems anyhow. lol I was told I was at stage 4 of the liver disease with some fibrosis. My chief complaint when my levels are up is the muscle, tissue and joint pain. When they were in the 1000's I screamed when I lifted my foot a half inch and my husband would slide my shoes off...the pain was terrible. I know when my levels are going up because I will have joint and muscle pain as if I have arthritis. This is a great group. I am mainly a lurker. Mainly because I write such long emails. But, I am sooooo thankful they let me lurk and learn so much about this disease that I will have to live with for the next 60 years or so. Or until a cure is found. Take care of yourself, get as much rest and fresh air as you can I know it always make a better day for me. Jennie in MI

Posted June 8, 2005 · June 8, 2005

Hi Angel did you try taking something besides Imuran? There are other meds and some people do better on them.

I understand the fatigue we all go through it. As you heal your energy should get better .

Please feel free to ask any questions you have someone will always answer you. There are alot of very knowledgable people here.

Welcome

Posted June 8, 2005 · June 8, 2005

Hi Angel,

You are not alone, I was diagnosed 8 years ago and was on Imuran for a

couple on months but it started to affect my blood so i had to come of

it my bloods went up for a while after that but then the pred got my

AIH under control, I had a few flare ups over the years but generally

kept very well. My Liver damage was very advanced so in Dec last year

I ended up having a liver Transplant and have never felt better.

I hope you start to feel better soon feel free to contact me anytime I

know EXACTLY what you are going through, Keep Positive i truly believe

that helps

> Hi, I was newly diagnosed with AIH in March. I am currently on

> Prednison 15mg, and was on Imuran 250mg although it started making

me

> very sick so I stoped it. My liver test were doing great, were back

> to normal and then they started going up again. I have blood taken

> again Thursday and hope they are better. I am not sure how much

> damage was done to my liver, the Doc said I would have to wait a

year

> for another biopsy to see how much scarring there is. I do have some

> pain in my right side but it is not bad. I do have alot of fatigue,

so

> am unable to work at this time. I also am a diebetic so am on

> insilin, ya all know what prednison does to blood sugars. I also

have

> nausea through out the day. I have found some chat rooms for AIH but

> no one is ever in them. I am open to all replys and hope I can find

> someone to talk to. angel

Posted June 29, 2005 · June 29, 2005

Hi Kathy,

No they haven't determined which autoimmune disease that I have. I

have tested positive for ANA but not AMA. My enzymes are quite

elevated. This has been a frightening experience. It's good to be

able to talk to people that have been through it. I'm about to turn 40

in a few weeks. I have xanthomas-more specific to pbc, but not the

positive AMA. I'm thinking I too may have both. Thanks for the

support-Dianne

Posted June 29, 2005 · June 29, 2005

Hi Kathy,

No they haven't determined which autoimmune disease that I have. I

have tested positive for ANA but not AMA. My enzymes are quite

elevated. This has been a frightening experience. It's good to be

able to talk to people that have been through it. I'm about to turn 40

in a few weeks. I have xanthomas-more specific to pbc, but not the

positive AMA. I'm thinking I too may have both. Thanks for the

support-Dianne

Posted June 29, 2005 · June 29, 2005

Hi Diane,

I'm Kathy. I am 40 years old and was diagnosed with Autoimmune Hepatitis and

Primary Biliary

Cirrhosis back in December.

Have the Drs put you on any medication to bring your liver enzymes down to

normal range?

Welcome to the group. Its a very supportive and friendly group of people who

know how you feel

and have been through it all.

...· ´¨¨)) -:¦:-

¸.·´ .·´¨¨)) Take Care,

((¸¸.·´ .·´ Kathy -:¦:-

-:¦:- ((¸¸.·´*

May your troubles be less, your blessings more, and nothing but happiness comes

through your

door!

§«¤»¥«¤»«¤»¥«¤»§«¤»¥«¤»«¤»¥«¤»§«¤»¥«¤»«¤»¥«¤»§«¤»¥«¤»«¤»¥«¤»§

Our loved ones never truly leave us...they live on in the kindness they showed,

the love they

gave, and the memories we have of them.

~~~~~~~~~~~~~~~~~~~~~~~~~

KeeslerAFBRelocationAssistance-subscribe

http://kmsavelio.tripod.com/chinookwindssiberianhuskies

SiberianHuskyDogBreeders-subscribe

MilitaryWeatherWives-subscribe

On Wed, 29 Jun 2005 17:22 , 'diannemass' <luzdianne@...> sent:

>

>Hello,

>

>My name is Dianne and I'm from MA. I came across this group while

>

>hunting for information on liver issues. I've recently been diagnosed

>

>with liver disease, likely related to autoimmune issues. This has been

>

>quite an experience as I didn't know that anything was amiss. I went

>

>to the dr's for routine blood work and was informed that I have

>

>abnormal liver enzymes. I've since been through a series of tests and

>

>it appears that I have a type of autoimmune disease. Not sure which

>

>one at this point. I was thrilled to find your group, as it appears to

>

>be very supportive. I look forward to getting to know all of you and

>

>having the opportunity to listen and learn. Good wishes-Dianne

>

Posted June 29, 2005 · June 29, 2005

Hi Dianne. Welcome. You'll find alot of support and very

knowledgeable people with Liver Disease experience here. I'm new to

the group - cirrhosis - almost lost my life back in September of

2004. Like you, I didn't know that anything was amiss. Woke up one

morning vomiting maroon colored blood. I knew that wasn't right.

Called my Doc. and rushed myself to emergency. Then one thing led to

another. I couldn't believe what was happening to me. I had always

been a healthy,active person. They say I'm a walking miracle. For

the amount of blood I lost, most people don't survive. They say

prayers and my strong heart is what got me through. I owe my strong

heart to my 2 daughters, 17 and 12. The loves of my life. My

Angels. ;-)

Take care and know that you have found a wonderful group to be a part

of.

I'm here, Peace, Cherie

> Hello,

> My name is Dianne and I'm from MA. I came across this group while

> hunting for information on liver issues. I've recently been

diagnosed

> with liver disease, likely related to autoimmune issues. This has

been

> quite an experience as I didn't know that anything was amiss. I

went

> to the dr's for routine blood work and was informed that I have

> abnormal liver enzymes. I've since been through a series of tests

and

> it appears that I have a type of autoimmune disease. Not sure

which

> one at this point. I was thrilled to find your group, as it

appears

to

> be very supportive. I look forward to getting to know all of you

and

> having the opportunity to listen and learn. Good wishes-Dianne

Posted June 29, 2005 · June 29, 2005

Hi Dianne! My name is Ellie. I am also new to this site. I am more of a reader than a participator. I was recently dx with AIH. It also was a complete surprise to me....and not a happy one. I haven't had a liver biopsy yet. The doctor tells me that will be in the near future. I was put on meds immediately; UrsoForte, Prednizone, and Azasan. I am now off of the Urso and the Pred. I'll get another checkup in two months. I'm hoping my liver count will be stabilized with just the Azasan. We'll see. Anyway, I wish you well. These people in this group are very knowledgeable and there is much to learn.diannemass <luzdianne@...> wrote: Hello,My name is Dianne and I'm from MA. I came across this group while hunting for information on liver issues. I've recently been diagnosed with liver disease, likely related to autoimmune issues. This has been quite an experience as I didn't know that anything was amiss. I went to the dr's for routine blood work and was informed that I have abnormal liver enzymes. I've since been through a series of tests and it appears that I have a type of autoimmune disease. Not sure which one at this point. I was thrilled to find your group, as it appears to be very supportive. I look forward to getting to know all of you and having the opportunity to listen and learn. Good wishes-Dianne

Posted June 30, 2005 · June 30, 2005

--- Hi dianne, I'm new to the group too. I was just diagnosed in

March.

So this is all new to me too. I'm just learning about this disease. I

also live in MA. The people here are just wonderful you don't feel

like

you are alone. You can learn so much here from everyone.

Missy

In , " diannemass " <luzdianne@a...>

wrote:

> Hello,

> My name is Dianne and I'm from MA. I came across this group while

> hunting for information on liver issues. I've recently been

diagnosed

> with liver disease, likely related to autoimmune issues. This has

been

> quite an experience as I didn't know that anything was amiss. I

went

> to the dr's for routine blood work and was informed that I have

> abnormal liver enzymes. I've since been through a series of tests

and

> it appears that I have a type of autoimmune disease. Not sure

which

> one at this point. I was thrilled to find your group, as it

appears

to

> be very supportive. I look forward to getting to know all of you

and

> having the opportunity to listen and learn. Good wishes-Dianne

Posted June 30, 2005 · June 30, 2005

Dear Dianne and Missy,

Welcome to this fabulously supportive group. I have been only lurking for the

last few months, I have had too much going on in my life. Now I will more

actively be around. Neither of you said very much about what kind of liver

problems you are having, maybe the doctor's have not yet determined it. I just

want you to know that there is life after diagnosis.

I have been diagnosed with a liver disease called something fatty liver disease,

usually aquired by people who drink a lot. I have never indulged in alcohol,

not even for a once a month drink of wine. Maybe once a year!

The doctors have told me my liver problem had to do with autoimmuno disease

also. I was diagnosed first when I broke out with " Discoid " (?) Lupus on my

skin,all over, and they did all kinds of tests including a liver biopsy and

determined that not only do I have a very enlarged liver, but also have a good

dose of liver cirrhosis. I was put on Ursodiol 4 caps a day , and am taking 4

caps of Milk Thistle with doctors' permission (approval?). This condition was

diagnosed in 1999 after many years of diabetes (for 10 years), asthma ( that

they did not know where it came from, or how to treat), arthritis (for 20 years)

and increasing levels of allergies. All somehow associated with autoimmuno

disorders. Since I started that regiment of the liver medication, plus " Actos "

for diabetes after it became available, I have progressively felt somewhat

better, very slowly.

I have not had another bout of lupus, my tests are OK, my asthma is under

control, my diabetes is fairly in control, and after my last gastrointestinal

exam for bleeding ( and removal of bleeding polyps) my anemia is in control. I

feel better than I have for a long time, although my 70 years is beginning to

interfere with the good feelings.

So be curious, ask questions, from the doctors and the members of this group,

and have faith. You will both be able to learn to live with this condition.

Clara from OR.

--- Hi dianne, I'm new to the group too. I was just diagnosed in

March.

So this is all new to me too. I'm just learning about this disease. I

also live in MA. The people here are just wonderful you don't feel

like

you are alone. You can learn so much here from everyone.

Missy

In , " diannemass " <luzdianne@a...>

wrote:

> Hello,

> My name is Dianne and I'm from MA. I came across this group while

> hunting for information on liver issues. I've recently been

diagnosed

> with liver disease, likely related to autoimmune issues. This has

been

> quite an experience as I didn't know that anything was amiss. I

went

> to the dr's for routine blood work and was informed that I have

> abnormal liver enzymes. I've since been through a series of tests

and

> it appears that I have a type of autoimmune disease. Not sure

which

> one at this point. I was thrilled to find your group, as it

appears

to

> be very supportive. I look forward to getting to know all of you

and

> having the opportunity to listen and learn. Good wishes-Dianne

Posted June 30, 2005 · June 30, 2005