Hi

[Guest guest]

Hi Terri

Sorry to hear about the tornados. I hope that they left you in one piece.

I am glad that I didn't scare you! ANy questions that may arise feel free to

e-mail me.

Take Care

in Tustin, CA

P.S. Where do you live?

Re: [ ] Hi

> Hi

> Thanks for the email. No you didn't scare just want to know what

> could be down the road for me. i appreciate any info i can get. we don't

> have many drs in my area that don't have a god complex. but right now

> i'm calming down after 4 tornadoes came thru just south of us last nite.

> please keep in touch.

> terri

>

>

>

[Guest guest]

Hi

I live in Joplin, Missouri Ozark land. Luckily the tornadoes that came

thru here only did property damage no injuries or deaths thank God. i

was sandwiched in the middle so all we had was high winds and

lightining. i keep losing weight is that normal? i've lost almost 50 lbs

since feb good thing i'm fluffy! also have darkening of my skin in

places and skin lesions esp on my arms and legs is this normal? How are

you feeling? hopefully good. i know i'm blonde but having greater

difficulty thinking at times. i make myself try to concentrate but when

i look t the keyboard at times its like i forgot how to spell the

letters look foreign. i really feel stupid can't go out wheni feel that

way because i panic. please keep in touch

terri

[Guest guest]

Hi Terri,

The questions you are asking. Please call your doctor. The memory is ammonia

buildup in your brain. The sores could be toxins from your liver being sick.

The liver will use the pores in your skin to release poisons. When I went

into complete liver failure I had this gross pimple type rash all over my

body. My body even smelled like sulfur and my hair was so gross. The nurses

washed my hair in ICU it was that bad. What medications are you on? Very

important to have an open line with your doc all the time. Are you sleeping

more than you care too? Weight loss can mean many things as well. Are you

seeing a Hep doc yet?

gayle trans/6-99 ^oo^

galye@...

[Guest guest]

reading all your letters makes me feel like I have had

these prblems for a long time...just slow in the

manifestation. It rained last night.We needed it so

much in West Coast Florida. I haven't had the weight

loss but the bloat instead...almost out of

clothes...lol..I am so heavy

--- tmurray4@... wrote:

> Hi

> I live in Joplin, Missouri Ozark land. Luckily the

> tornadoes that came

> thru here only did property damage no injuries or

> deaths thank God. i

> was sandwiched in the middle so all we had was high

> winds and

> lightining. i keep losing weight is that normal?

> i've lost almost 50 lbs

> since feb good thing i'm fluffy! also have darkening

> of my skin in

> places and skin lesions esp on my arms and legs is

> this normal? How are

> you feeling? hopefully good. i know i'm blonde but

> having greater

> difficulty thinking at times. i make myself try to

> concentrate but when

> i look t the keyboard at times its like i forgot

> how to spell the

> letters look foreign. i really feel stupid can't go

> out wheni feel that

> way because i panic. please keep in touch

> terri

>

>

__________________________________________________

[Guest guest]

Gayle

Thanks for the info. I don't see GI until July. I'm on prevacid,

celexa, fentanyl patches, valium, flexeril, 2 asthma inhalers,

potassium,i think that's all not sure. i feel bad when i go into public

because people look at my arms and legs like i'm a leper. i have a good

relationship with my fp dctor but he doesn't know anything about hep c

or at least not enough to feel like treating me for it. i figure the

sores came from my liver but wasn't totally sure. please keep in touch

terri

Hi Terri,

The questions you are asking. Please call your doctor. The memory is ammonia

buildup in your brain. The sores could be toxins from your liver being sick.

The liver will use the pores in your skin to release poisons. When I went

into complete liver failure I had this gross pimple type rash all over my

body. My body even smelled like sulfur and my hair was so gross. The nurses

washed my hair in ICU it was that bad. What medications are you on? Very

important to have an open line with your doc all the time. Are you sleeping

more than you care too? Weight loss can mean many things as well. Are you

seeing a Hep doc yet?

gayle trans/6-99 ^oo^

galye@...

[Guest guest]

Please remove us from your mailing list.

Re: [ ] Hi

> Hi Terri,

> The questions you are asking. Please call your doctor. The memory is

ammonia

> buildup in your brain. The sores could be toxins from your liver being

sick.

> The liver will use the pores in your skin to release poisons. When I went

> into complete liver failure I had this gross pimple type rash all over my

> body. My body even smelled like sulfur and my hair was so gross. The

nurses

> washed my hair in ICU it was that bad. What medications are you on? Very

> important to have an open line with your doc all the time. Are you

sleeping

> more than you care too? Weight loss can mean many things as well. Are you

> seeing a Hep doc yet?

>

> gayle trans/6-99 ^oo^

> galye@...

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

NO NO Bonnie, I wasn't exactly stealing the cute lines, just taking silent

credit for them! Ok please forgive me. I am so glad you are feeling better

today, and hey I dont care where the party is, as long as it has blue sky

outside. Guess what MORE rain today (all day) and a thunderstorm just to

shake it up a bit. Can anyone guess tomorrows forcast - yep, you got it

RAIN. I will keep you all posted, I think it must be a world record. I

just pray to God that Mon, Tues is nice, my days off. I could never live in

Seattle. I foget who lives there that posts---Kim maybe? Anyway , I would

be more psychopathic than I am.......

The weather is even driving our 100# black lab Caesar crazy, try to keep him

cooped up for a week.....I did feel pity for him and walk him in the light

sprinkles last evening. Cant even let him out in our yard as we live in the

woods, and you know kids, dogs and mud..........I would really need that

cleaning man! ; )

[ ] Hi

> Hi ...is April stealing my lines of cuteness?

> Say it isn't so....lol. its just the way the e-mails

> come along..its hard to tell where and who they are

> coming from. I was raised in Brevard county on the

> beach. I remember vaguely playing one night at a bar

> that resembled a 1 story castle. I recently tried to

> find it but the area has grown out of control. An

> east coast florida person has a bit of a struggle on

> the west coast but I like many spots here so I am

> starting to feel more at home.

> I am feeling much better today...going to the

> doctor,wouldn't you know I am feeling better .Isn't

> that the way it goes...not well but better.

> Have a good day

> everyone!

>

> Bonnie

> --- dagelo <dagelo@...> wrote:

> > Hi April,

> > Your wording of " excellent fat marbling in my liver "

> > was almost too cute! I did laugh with sympathy

> > pains because I also have that " unusual steak " in my

> > upper belly. When the surgeon took pictures of it

> > at my recent hysterectomy, he just cluck-clucked and

> > said " its horrible, hope you can see a healthy one

> > soon " . (me too). I live in Melbourne, FL, on the

> > east coast. Genny and I have kept phone contact

> > several times and I " almost " talked to Debbie/FL

> > when she rang into Genny at the same time I did!

> > I'm so happy to hear of Elyse doing well..my prayers

> > to you and your family (wherever you may roam!!)

> > God bless,

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

.. what type of jra do you have? my 6yr old daughter has

polyarticular.. kellie

>From: t82@...

>Reply-

>

>Subject: Hi

>Date: Sun, 27 May 2001 19:45:37 -0000

>

>Hello, I just wanted to introduce myself and tell you a little bit

>about me and my arthritis. I am 18 years old and I have had arthritis

>since I was 10 so far 8 years. I have been through a lot in these 8

>years and I wouldn't wish it upon anyone. When I first found out I

>had arthritis I was on IV steroids for about 2 years which was awful

>becuase I gained a lot of weight and kids started making fun of me at

>school. I guess I am telling you this so that maybe your child

>wouldn't have to go through this, becuase I got to a point where I

>wanted to kill myself and almost did. Now, I am very good except for

>the fact that I am on Methotrexate. I really hate it because it makes

>me sick! but other then that I am doing pretty well. If anyone would

>like to ask me any questions or talk to me I am always somewhere

>around here. Just e-mail me or post a message I am sure to get it! I

>guess this is all for now! So God Bless All Of You!

>

> Love in Christ,

>

>

>

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

I have been on many many meds. For my arthiritis I was on IV methotrexate,

pill form methotrexate (on now) (the two work very differently), IV

steriods, Pill steriods, Relifin, Celebrex, Vioxx(I'm on now). I think that

is about all for my arthritis. I am very much against shots so I have tried

anything like that. my IV meds were done through a central line I had.

Things have changed a lot...well, I have gotten worse. I guess the

hardest part is when I was on IV steriods I gained a lot of weight and kids

made fun of me which lead my life down hill. I have recently felt better

about myself. I also, felt bad because I couldn't do things everyone else

can. I think that was the hardest part! I can tell you to try and have your

daughter partictipate in WEDSRA (kids w/ disabilities sports) I greatly

regret not doing that. hmm, what else could I say...The biggest thing I

suggest is....Don't put your child on IV steriods if at all possible!

Ok now onto Therapy....I am not one to talk about this...I hated therapy

and I never did it. I have lost a lot of range of motion which is bad. I made

a deal with my doctor that if I kept myself active I wouldn't have to do

therapy and that has worked so far. I currently walk a lot and ride my

bike...also I do a lot of streching! I can't handle people tellin me what to

do. that is my biggest pet peave.

I hope I helped! Please e-mail me if I can answer anymore questions! I

want to help as much as I can. Where are you from? I'm in IL. buh bye and God

Bless both you and !

(18; PolyJRA)

[Guest guest]

jennifer.. hello again just a few questions.. what all types of meds have

you been on? how have things changed for you in sence you found out you had

jra till now? did you or do you have to go to therapy? i am still trying to

learn all i can so i can help my daughter anything you can tell me would be

appreciated.. thank you.. kellie & jessica (6yr poly)

>From: t82@...

>Reply-

>

>Subject: Re: Hi

>Date: Sun, 27 May 2001 20:51:32 EDT

>

>I have polyticular also.

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

jessica started on naprosyn then later was added plaguenil (100mg) then when

we went back this last time she switched her to vioxx and increased her

plaquenil to 20 mg and was talking about if the swelling isn't down by next

visit ( in 2 months) she wants to start her on the methotrexate shots but i

am kinda learly of that i didn't like the side affests she was telling me

the main one was where it has shown to produce some types of cancer down thw

line she sid not right away but like 10 years.. i don't think i wanna hear

when my daughter is 16 that she has cancer.. it would kill me. she goes to

therapy 3 times a week and has sence jan. of this year which seems to be

helping and he said if he was me he'd stay away from the shots as long as

possible.. he said sence she can move and stuff like a kid and we are

makeing progress that we should just wait. are you ana posotive? my

daughter is. she only weighs 40 lbs as of right now she just gained 2 lbs

and i was so excited.. well keep in touch and anything else you think of

feel free to write me.. we live in erie pennsylvania. thanks alot.. kellie &

jessica

>From: t82@...

>Reply-

>

>Subject: Re: Hi

>Date: Mon, 28 May 2001 20:52:31 EDT

>

>I have been on many many meds. For my arthiritis I was on IV methotrexate,

>pill form methotrexate (on now) (the two work very differently), IV

>steriods, Pill steriods, Relifin, Celebrex, Vioxx(I'm on now). I think that

>is about all for my arthritis. I am very much against shots so I have tried

>anything like that. my IV meds were done through a central line I had.

> Things have changed a lot...well, I have gotten worse. I guess the

>hardest part is when I was on IV steriods I gained a lot of weight and kids

>made fun of me which lead my life down hill. I have recently felt better

>about myself. I also, felt bad because I couldn't do things everyone else

>can. I think that was the hardest part! I can tell you to try and have

>your

>daughter partictipate in WEDSRA (kids w/ disabilities sports) I greatly

>regret not doing that. hmm, what else could I say...The biggest thing I

>suggest is....Don't put your child on IV steriods if at all possible!

> Ok now onto Therapy....I am not one to talk about this...I hated

>therapy

>and I never did it. I have lost a lot of range of motion which is bad. I

>made

>a deal with my doctor that if I kept myself active I wouldn't have to do

>therapy and that has worked so far. I currently walk a lot and ride my

>bike...also I do a lot of streching! I can't handle people tellin me what

>to

>do. that is my biggest pet peave.

> I hope I helped! Please e-mail me if I can answer anymore questions!

> I

>want to help as much as I can. Where are you from? I'm in IL. buh bye and

>God

>Bless both you and !

>

> (18; PolyJRA)

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Hi ,

Thanks so much for your note and for your generosity and willingness to

try to help others who may have questions about the experience of JRA.

I'm so glad that your arthritis is being controlled pretty well now and

that you're feeling better these days. You must have been very sick in

the beginning, to have needed such a long course of IV steroids. You

know better than me what those side effects can be like. And not just

the visible ones, either. They definitely can affect your mental state

too, as you well know.

My son has been taking weekly methotrexate for almost six years. He's

complained of it's side effects, too. In fact, we just switched back to

his taking it on Fridays instead of Thursdays so he doesn't have to

worry about school the next day. He can sleep late, take it easy. When

you say that it makes you sick, how exactly do you mean? gets

more tired afterwards. And he says he feels weird ~ sort of dizzy,

lightheaded. Is that how it affects you, too? Just wondering. Also, do

you take folic acid?

Thanks for sharing,

Georgina

t82@... wrote:

>

> Hello, I just wanted to introduce myself and tell you a little bit

> about me and my arthritis. I am 18 years old and I have had arthritis

> since I was 10 so far 8 years. I have been through a lot in these 8

> years and I wouldn't wish it upon anyone. When I first found out I

> had arthritis I was on IV steroids for about 2 years which was awful

> becuase I gained a lot of weight and kids started making fun of me at

> school. I guess I am telling you this so that maybe your child

> wouldn't have to go through this, becuase I got to a point where I

> wanted to kill myself and almost did. Now, I am very good except for

> the fact that I am on Methotrexate. I really hate it because it makes

> me sick! but other then that I am doing pretty well. If anyone would

> like to ask me any questions or talk to me I am always somewhere

> around here. Just e-mail me or post a message I am sure to get it! I

> guess this is all for now! So God Bless All Of You!

>

> Love in Christ,

>

[Guest guest]

I take my Methotrexate on Fridays becuase if I don't I will be sick at

school. I hate the medicine because it make me sleep almost all of saturday.

I hate being on that med but it makes a big difference if I am not on it. I

can't write long becuase I am sore right now for some odd reason! My side

affects are mostly dizzy, neasuea, headache, rashes, chills, ect... that is

mostly about it. I currentlly am feeling all of those symptoms! I am just

getting sick I think! well God Bless!

[Guest guest]

Hang in ther, I hope you feel better soon CJ

[Guest guest]

Kelli & ,

I have been on Methotrexate shots before, but not for very long I got

very sick from them. As for causeing Cancer later in life I am not sure but I

know the doctor told my mom that is sometimes what they give people to rid

them of cancer. At 6 years old..there is nothing else they can give her?

Where are you two from? I am in IL. Here they have a camp for kids with

Arthritis. I have gone for the past couple years and this year I am going to

be a camp councilor. That camp has changed my outlook on arthritis. Have you

talked to the arthritis foundation where you are from?

I dunno what else to tell you. hmm. Iam not a doctor but i kinda wish I

was! I hate to see Children in pain esspecially from something like

arthritis. I have to go now but e-mail me back please! thanks a lot! I hope I

helped some!

[Guest guest]

Hi, I've never had methitrexate in injection only orally. I have however,

received gold that way and it nearly killed me! I tore down my body,

blood count was a low 5 which is dangerously low. My werght went from a

healthy 116pds. to 89pds.

I became so hunched over from weakness, that I went from 5'4 " to under

5'. But doctors at University Hospital Ann Arbor, " Oh we need to get the

gold levels higher " , and so they did ! Until one day I say enough!

I could not take the drive from home to Ann Arbor any more, my mother

drove me, after receiving the injection, I would get in car, and before

we left town for the drive home, I would be out like a light and sleep

all the way back home.

Even after getting home I would come in the house and fall asleep in the

stuffed chair and sleep through out the night.

My advise to all is, DON'T take the advise of only one doctor, ask and

seek out others, for a second opinion. And above all, keep your children

active, be it through swimming, bicycling even walking .

Also use isometrics are a good form of exercise for jra patients.

It is a cruel and costly disease to have, and very few people really

understand it. My own family, after 33 years of dealing with my jra still

don't know

that is except for my younger sister, who was recently evidenced the

onset of R.A. in her thirties she came to me one day and said, " I

don't know how you did it all those years, I've only had this for two

years and it feels like it's going to kill me " my response was you take

it one day at a time, that's all you can do !

Just don't give up, because it will take over!

And it has no sympathy for children or adults!

Arthur is a cruel fellow! and Ritis isn't to nice either!

Morse

That's - , like the duck, Morse like the code!

so you can call me

Quacky Code!

[Guest guest]

thanks jenny.. i think so far with this new dose of plaquinel it seems to be

helping but i really think i am going to stay away from methotrexate for as

long as i can.. i feel she is doing pretty good for the time being hopefully

she'll stay this way.. thanks again.. feel free to e-mail me anytime kellie

& jessica

>From: t82@...

>Reply-

>

>Subject: Re: Hi

>Date: Mon, 4 Jun 2001 02:24:44 EDT

>

>Kelli & ,

> I have been on Methotrexate shots before, but not for very long I got

>very sick from them. As for causeing Cancer later in life I am not sure but

>I

>know the doctor told my mom that is sometimes what they give people to rid

>them of cancer. At 6 years old..there is nothing else they can give her?

> Where are you two from? I am in IL. Here they have a camp for kids

>with

>Arthritis. I have gone for the past couple years and this year I am going

>to

>be a camp councilor. That camp has changed my outlook on arthritis. Have

>you

>talked to the arthritis foundation where you are from?

> I dunno what else to tell you. hmm. Iam not a doctor but i kinda wish

>I

>was! I hate to see Children in pain esspecially from something like

>arthritis. I have to go now but e-mail me back please! thanks a lot! I hope

>I

>helped some!

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

I want to thank every one who E-mail me thank for caring and for the

engagement from Eddy

[Guest guest]

hey, my name is Greg.i just saw your message.what made you go to the doc. in the first place,and how did he determine that your bile ducts were enlarged? e-mail or IM me if you want.

kgreg777@...

Greg

[Guest guest]

My mum recently told me that when I was in hospital I slept with my eyes open

lol. Just out of curiosity did anyone else?

Vicky

[Guest guest]

In a message dated 10/16/01 11:48:18 AM Pacific Daylight Time, lindsayud@... writes:

Hi!

I am new to the group and newly diagnosed with AIH. I am not really sure how this group thing works, so I thought I would try it out. I have been on Prednisone for about a month now and I just started with Azathioprine too. If anybody has any advice or would like to chat, just let me know!

We're glad you found this site. It's a good place to ask questions, exchange information, or just talk. As a starting point, I recommend a basic, highly readable reference book, "Dr. Palmer's Guide to Hepatitis and Liver Disease." ISBN 0-89529-922-4, Avery Press. The paperback book is available in many bookstores for $15, from Amazon.com for about $13, and from her website for about $11.

A similar book by G. Worman is also very good, with a slightly more academic tone.

Best wishes, and stay in touch.

Harper (AIH 5/00)

[Guest guest]

Hello, I am also new to the group, and I have gotten alot of advice already.

I have had AIH now for 4 years and I was on prednisone for about 2 years and

aziothorpine for the 4 years if you've got questions maybe I can help with

some answers.

Lucy.

[Guest guest]

In a message dated 10/16/01 2:02:02 PM Pacific Daylight Time, jaknjills@... writes:

hi linda, i`m new to this group also. I was diagnosed with aih just over 2 years ago, and so far havn`t met anyone who has the same illness, so it was good for me to find this group.

I`ve been on prednisolone for 2 years now. The doctors tried me on azathoprine twice but each time it made me sick. I hope you can get on with it better. I`ve heard people who are tolerant to it start to feel much better after six months or so. If you have any questions i`ll try to help, i`ve found a few web sites since i started this journey.

Have you had a biopsy? I hope your starting to feel better with the medications. Take care. jacqui

Glad to hear from you, Jacqui. You say you can't tolerate Aziothioprine. Have you tried CellCept or 6-MP in its place?

Best wishes.

Harper (AIH 5/00)

[Guest guest]

In a message dated 10/16/01 2:16:23 PM Pacific Daylight Time, roath@... writes:

Hello, I am also new to the group, and I have gotten alot of advice already. I have had AIH now for 4 years and I was on prednisone for about 2 years and aziothorpine for the 4 years if you've got questions maybe I can help with some answers.

Lucy.

Great! We're always looking for ideas, sources of information.

Harper (AIH 5/00)

[Guest guest]

hi linda, i`m new to this group also. I was diagnosed with aih just over 2 years ago, and so far havn`t met anyone who has the same illness, so it was good for me to find this group.

I`ve been on prednisolone for 2 years now. The doctors tried me on azathoprine twice but each time it made me sick. I hope you can get on with it better. I`ve heard people who are tolerant to it start to feel much better after six months or so.

If you have any questions i`ll try to help, i`ve found a few web sites since i started this journey.

Have you had a biopsy? I hope your starting to feel better with the medications. Take care. jacqui

>From: lindsayud@... >Reply- > >Subject: [ ] HI >Date: Tue, 16 Oct 2001 18:45:28 -0000 > >Hi! >I am new to the group and newly diagnosed with AIH. I am not really >sure how this group thing works, so I thought I would try it out. I >have been on Prednisone for about a month now and I just started with >Azathioprine too. If anybody has any advice or would like to chat, >just let me know! > Get your FREE download of MSN Explorer at http://explorer.msn.com