New to Group

[Guest guest]

I read your post with interest, Cheryl, regarding the stages of fibrosis. I

was recently diagnosed and told I had stage 4 fibrosis (considered

cirhossis). I too was wondering how the stages are determined, and when

does fibrosis become cirrhosis. Any explanation from out there will really

be appreciated.

Pat

_________________________________________________________________

Express yourself instantly with MSN Messenger! Download today - it's FREE!

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[Guest guest]

Hi . Welcome to the group.

> Hello My name is and I am 40 yo. I was diagnosised with

RA

> three years ago. I was on meds but I am currently off meds. My

> doctor is starting Methotrexate injections once he reviews my

> labwork. I look forward to meeting others and learning more about

> this disease.

>

>

[Guest guest]

Welcome, ! I'm looking forward to learning more about you.

Hope you'll like it here.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] New to group

> Hello My name is and I am 40 yo. I was diagnosised with RA

> three years ago. I was on meds but I am currently off meds. My

> doctor is starting Methotrexate injections once he reviews my

> labwork. I look forward to meeting others and learning more about

> this disease.

>

>

[Guest guest]

Hi Jodi,

Being from the TN. chapter and meeting you I have been hopeing you would join.

I promise if you stick around you will be an expert before long.This list was

my life saver 3 yrs ago and I don't know what I would have done without

Georgina and all the great members,they are like family,only they REALY get it.

Us systemic moms came back from AJAO wondering about Plaquenil and MASS and

so far Sulfasaline is the only no no to be found,except Gold,which isn't used

anymore.

Please stick around ,ask questions,tell your story,vent like crazy,talk about

good days,cry over bad days.Thats what we are all here for.

Hugs

Becki and 6systemic

[Guest guest]

Welcome Jodi. You are right, this is the list to be on for info. My

daughter is n, age 15, and she has had systemic for five years. She is

on enbrel and naprosyn. Big problems with her wrists at the moment.

(n,15, systemic)

new to group

> My mane is Jodi, I am new to this group. I have a systemic daughter

> who is 8yrs old. I met some wonderful people at the AJAO this

> year.They all said this was the list to be on.

> Just wanted to say say hello, and sit quitly for a while in the

> background. I hope I get to know all of you very soon.

>

> God Bless

> Jodi

>

>

>

>

>

>

>

[Guest guest]

Becki,

^5 you got that right lolol. Ok y'all i am having to care for the baby.

Seems like I am sole care giver for the baby for now. It's adventously FUN

again.

lololol She's 1 month old today. I am reading the post's as I can.

Robbin

[Guest guest]

Hi Jodi,

I can't say if we met or not at AJAO. Did you go to either of the

gazebo gabs for systemic?? At that time, we all exchanged email

addresses and gathered them and sent them out to us. Do you

want to get on that informal email contact (or are you already on

it?)

Colleen is also new to the since the AJAO and was at a lot

of the systemic talks.

Welcome and pipe in anytime.

Stacia and Hunter 8 systemic, iritis

[Guest guest]

Hi Jodi,

Welcome - and this is the list to be on. I was at the AJAO this year, and as

with the ones that I have been lucky enough to attend in the past, I found it

emotional, depressing, informative, uplifting, entertaining and draining - all

together - and I wouldn't have missed it for the world. Plus seeing many of my

friends from the list topped t off beautifully!

There is a world of information here - I don't know how I would have coped with

this had I not found this wonderful group of people.

Val

Rob's Mom (6,systemic)

In a message dated 8/23/2004 7:59:57 PM Eastern Daylight Time, " azteardrops2003 "

<azteardrops2003@...> writes:

>My mane is Jodi, I am new to this group. I have a systemic daughter

>who is 8yrs old. I met some wonderful people at the AJAO this

>year.They all said this was the list to be on.

>   Just wanted to say say hello, and sit quitly for a while in the

>background. I hope I get to know all of you very soon.

>

>God Bless

>Jodi

>

>

>

>

>

>

>

[Guest guest]

Yes, we have chosen this illness by not choosing our parents more

carefully, LOL. When it comes to genes passed down, you just get pot

luck. If there had been choice involved, I would have chosen some other

disease.

The way of living with RA before my rheumy found the best drug for me

was to live in constant pain. I couldn't open a bottle or jar; I

couldn't wring out a dish cloth or wash cloth or a mop; I had to pee

standing over the commode because it hurt too much to bend my knees; I

couldn't cut my own meat.

Thank goodness there are drugs that give some of us some relief.

Sue

On Wednesday, September 8, 2004, at 04:53 PM, Adrienne wrote:

>

> Do any of you feel that at some level we have chosen this illness and

> that

> we can make different choices? I expect I'll offend some of you who

> have not

> come across this concept by saying this; forgive me. Has anyone found

> a way

> to live with RA that doesn't involve drugs?

[Guest guest]

Hi Adrienne and welcome to the group.

Countless people have had no choice but to live with RA without the

drugs. My mom was one of them, becuase she got RA before the drugs

were available. I grew up watching her suffer. For years her

doctors gave her aspirin and said to wait and see what happened.

Well, they waited and saw her body completely deteriorate because of

the joint desctruction. Today she is disabled (can't work, can't do

many things she wants to do), has very disfigured hands and feet,

her ankles and wrists are falling apart and she is in almost

constant pain. And keep in mind, she's on good drugs now. The pain

and problems she has are from irreversible joint damage she suffered

in the early years of the disease.

I was diagnosed a year ago. Because I started treatment right away

with medication, and I was fortunate to have a good rheumatologist

and that the medications I tried worked well for me, my outlook is

much different from my mother's. I do not expect to be disabled or

disfigured. And my odds of living the rest of my life the way I

want to, with some limitations due to fatigue and the occasional

flare, are very high.

I understand disdain for the drugs. I never took medication for any

reason before the RA. I always let my body heal itself, as it was

designed to do. And if I had not watched my mother suffer, and had

not known before I even got RA, that today's biological drugs truly

are miracles and the closest thing we have to a cure, then maybe I

would feel the way you do. But I know first hand that the

medications will never harm me as much as the RA will.

This group has a wonderful, diverse membership and I am glad you

have joined us.

Jennie

> I'm particularly interested in learning how to live with this

disease,

> particularly to get some kind of psychological perspective. I've

been

> reading a fascinatng book called The HEaling Power of Illness by

Thorwald

> Dethlefsen which gives some insight into illness and this one in

particular.

> Do any of you feel that at some level we have chosen this illness

and that

> we can make different choices? I expect I'll offend some of you

who have not

> come across this concept by saying this; forgive me. Has anyone

found a way

> to live with RA that doesn't involve drugs?

>

> Many thanks

> Adrienne CAmpbell

>

[Guest guest]

Adrienne,

Welcome to our group. We all wish there was a way to treat this disease

without drugs, but unfortunatly for me it hasn't happened. A few lucky

people have found that food allergies were the cause of the inflammation and

dietary changes improved their arthritis but aren't a cure. Supplements

have shown to help inflammation but not cure the disease.

The meds we take also don't cure the disease but have the potential to put

us in drug induced remission. The problem with trying non-drug routes, is

that this disease can erode joints without you being aware of what is

happening until it is to late. RA drugs can slow the progression of the

erosion. Early treatment with RA drugs has the best chance of causing

remission.

As the owner of this group, I've read many accounts of the start of this

disease, and think the theory of Thorwald Dethlefsen that symptoms are

expressions of psychological conflicts, and can only be healed when we

become aware of what is behind the problem, is full of bunk. Many very

active, happy, successful people have been struck with this disease

overnight. How can this theory apply to infants and children that are

affected with this disease? I know he also believes in reincarnation, so I

guess he believes we chose these diseases in previous lives.

a

> Hi

> I'm Adrienne from England. I was diagnosed with RA a year ago and in that

> time I've been trying to make it go away through changing my diet radically

> and taking supplements like fish oils, vitamins and glucosamine.

>

> The attacks have reduced in severity and length but I've just recently

> accepted that RA is here to stay.

>

> I'm particularly interested in learning how to live with this disease,

> particularly to get some kind of psychological perspective. I've been

> reading a fascinatng book called The HEaling Power of Illness by Thorwald

> Dethlefsen which gives some insight into illness and this one in particular.

> Do any of you feel that at some level we have chosen this illness and that

> we can make different choices? I expect I'll offend some of you who have not

> come across this concept by saying this; forgive me. Has anyone found a way

> to live with RA that doesn't involve drugs?

>

> Many thanks

> Adrienne CAmpbell

[Guest guest]

Welcome, Adrienne! Sorry about your RA diagnosis.

In cases of true RA, especially those which are characterized by

aggressive, erosive disease, it would be foolhardy to abandon DMARDs as

part of therapy.

Although I'm not familiar with Dethlefsen's theory or book, no, I don't

believe that " at some level we have chosen this illness. " As a

pointed out, very young children suffer from RA and other terrible

diseases. How would that sort of notion apply to them? In general, I

believe the " blame the patient " theories are quite harmful.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] New to group

> Hi

> I'm Adrienne from England. I was diagnosed with RA a year ago and in

that

> time I've been trying to make it go away through changing my diet

radically

> and taking supplements like fish oils, vitamins and glucosamine.

>

> The attacks have reduced in severity and length but I've just recently

> accepted that RA is here to stay.

>

> I'm particularly interested in learning how to live with this disease,

> particularly to get some kind of psychological perspective. I've been

> reading a fascinatng book called The HEaling Power of Illness by

Thorwald

> Dethlefsen which gives some insight into illness and this one in

particular.

> Do any of you feel that at some level we have chosen this illness and

that

> we can make different choices? I expect I'll offend some of you who

have not

> come across this concept by saying this; forgive me. Has anyone found

a way

> to live with RA that doesn't involve drugs?

>

> Many thanks

> Adrienne CAmpbell

[Guest guest]

Sue,

Just out of curiousity - what disease would you have picked?

I can think of tons that are worse than RA, particularly those that

can kill you or one's that there are no effective treatments for. I

would not want to have gotten RA 15 years ago, but I don't think

getting it today is nearly as bad as some other things I could have

gotten.

Now, if I had to choose I would have not gotten anything. That is

for sure. But I am not sad about getting it (not all the time at

least). RA has forced me to re-assess every single thing in my life

and determine what really is important to me. As a result, I am much

happier than I was a year and 1/2 ago.

Jennie

If there had been choice involved, I would have chosen some other

> disease.

>

[Guest guest]

Adrienne,

To give you a different perspective and add to what a said

regarding infants and children. When I was in first grade (6 yo?) I

was diagnosed with juvenile rheumatoid arthritis. At that point I

don't believe I was able to even fully understand the disease or

make a fully competent decision. From first through fifth grade my

parents and doctors at CHOPs tried multiple drugs only to be lucky

enough to have MTX be in it's experimental stage and be part of the

study. During fifth grade my RA went into remission for the next 17

years only to recently have my RA flare up again. I do fully

believe the MTX and an outstanding group of JRA specialists were the

reason for this remission as mental development at 11 still did not

have me fully understanding the disease or the world around me.

I respect your idea and find it interesting but wanted to add some

experiences to your knowledge base.

Best Wishes,

> Hi

> I'm Adrienne from England. I was diagnosed with RA a year ago and

in that

> time I've been trying to make it go away through changing my diet

radically

> and taking supplements like fish oils, vitamins and glucosamine.

>

> The attacks have reduced in severity and length but I've just

recently

> accepted that RA is here to stay.

>

> I'm particularly interested in learning how to live with this

disease,

> particularly to get some kind of psychological perspective. I've

been

> reading a fascinatng book called The HEaling Power of Illness by

Thorwald

> Dethlefsen which gives some insight into illness and this one in

particular.

> Do any of you feel that at some level we have chosen this illness

and that

> we can make different choices? I expect I'll offend some of you

who have not

> come across this concept by saying this; forgive me. Has anyone

found a way

> to live with RA that doesn't involve drugs?

>

> Many thanks

> Adrienne CAmpbell

>

[Guest guest]

That's a hard question to answer, Jennie. I would have to do some

research in order to decide. But of the several diseases that I have, I

like diabetes the best. That's because there are things that I can do

to control it, such as eating fewer carbs and exercising. RA seems to

be out of one's control, but Enbrel is doing a very good job of

controlling it for now. Sue

On Thursday, September 9, 2004, at 08:25 AM, Jennie G wrote:

> Sue,

>

> Just out of curiousity - what disease would you have picked?

[Guest guest]

> Hi

> I'm Adrienne from England. I was diagnosed with RA a year ago and

in that

> time I've been trying to make it go away through changing my diet

radically

> and taking supplements like fish oils, vitamins and glucosamine.

I did that, too.

> Do any of you feel that at some level we have chosen this illness

and that

> we can make different choices?

It's possible.

Has anyone found a way

> to live with RA that doesn't involve drugs?

No. I tried everything else first, and was very nervous about the

meds. However, the drugs have been a godsend to me. I continue to use

complementary therapies such as acupuncture, massage, supplements,

etc. I didn't realize how must I trusted/appreciated science unil I

got RA. There are a lot of theories out there re: alternative

treatments, but when joint damage is at stake, I want to see some

evidence.

S

[Guest guest]

Hi Adrienne

I am Judith and also in the UK I have been diagnosed with RA for just over 4

years now. It took me a longtime to accept that I had the disease, I don't

believe that anyone would choose to have this disease - why would anyone

want this disease? I have just started taking Leflunomide (Arava) together

with Sulphasalizine and touch wood do not seem to have had any side effects

other than feeling a little nauseous. I did go through a period of denial

and stopped taking medication and all that happened was my condition

worsened I have accepted what my rheumatologist says in order to prevent

flares and joint deformity it is very important to treat the RA often very

aggressively and as early as possible. I don't think that diet vitamins etc

would put your condition into remission but alongside conventional medicines

it may help. I think you have to be guided by your consultant and I am

lucky as I have a very understanding one that I trust.

Kind wishes

Judith

Re: Methotrexate

>

> Do you guys notice a difference in side effects sometimes from week

> to week, or once you get past any initial side effects, is it

> generally OK? I've been taking methotrexate orally for about 5 months

> now. Some weeks I'm fine...just a little fatigue the next day, but

> no nausea. But every once in a while, I'll feel really lousy for

> about two days after taking it, almost like I've got the flu or

> something. I haven't been able to find any kind of pattern, like how

> much water or food I've had. I always take it with food and I try to

> drink plenty of water afterwards.

>

>

>

>

>

> > Hi ,

> >

> > << One question you asked somewhere in there was about swelling and

> itching

> > in your legs. That sound like water retention to me. When I

> retain fluid in

> > my thighs, they itch like crazy. What causes it for me is not the

> RA, but the

> > meds. Prednisone and anti-inflamatories are notorious for causing

> fluid

> > retention. >>

> >

> > I've definitely been having issues with fluid-retention - it was

> one of the

> > first things my rheumy pointed out on my initial visit. She put me

> on lasix

> > (and potassium) right away and I promptly dropped 35 of the 40

> pounds I put on in

> > 5 months at college - I'm only 5 feet tall, so as you can imagine,

> I feel

> > *much* better now! It's also nice to have a solution for how in

> the world I

> > managed to put on half again my original body weight in such a

> short amount of

> > time. I knew I wasn't eating *that* much....

> >

> > I digress (as usual). My question would perhaps have been better

> phrased, " Is

> > there any connection between RA and fluid retention that is *not*

> drug

> > related? " This comes about because I wasn't on NSAIDs or pred (to

> speak of... a

> > single two week burst I think?) when the massive weight gain

> started. It just

> > occurred to me to wonder if this might have in fact been an early

> (if bizarre)

> > indication of RA - or some kind of fallout due to RA - that I'd

> missed.

> >

> > In any case, there's no doubt that it's fluid and not " true " weight

> gain, so

> > I guess I can be grateful for that. Being on the lasix has also

> resulted in my

> > feet looking semi-normal for the first time in about 12 years...

> they've

> > never been completely normal of course, but they've also had some

> weird skin

> > issues for a long, *long* time, which now appear resolved. I'd

> ascribe the fluid

> > retention to the CP, and that may be a minor factor, but till very

> recently I've

> > always been an ambulatory biped-type creature (i.e. only using my

> chair for

> > long distances), so I can't imagine that's the whole puzzle... who

> knows.

> >

> > Thanks for the help!

> >

> > Meg

> >

> >

> >

[Guest guest]

Hi, Caz, and welcome to our group. We hope you'll share some of

your support here with us. Lots of great folks here!

Hugs and prayers,

Suzy

>

> Hi, I live in the UK & have hepc. I have a hepc group on

> everyone is welcome

>

> BikersWithHepC/

[Guest guest]

-HI and welcome...

This is a great group and although its not the place any one of

*want* to be, im so thankful to be here....

My son, Nick was also thought to have Kawasaki's in the begining..

that was nearly two years ago now.. wow, how time flies. I do

understand all you are going though. It can be a long and uncertain

road, but you will learn soo much from here that will help make it a

little easier.

Again, welcome and ask any questions we are all here to help each

other.

Hugs Helen and (7,systemic)

-- In , " mamafivesons " <mamafivesons@y...>

wrote:

>

>

> Hi- I just found this site and decided to join the group. I don't

> know all the computer stuff and lingo but will learn as I go. My

> typing and grammar aren't the greatest either...

> I have a son, our youngest, who was diagnosed last year at

the

> age of 15 months with systemic jra. He was first " misdiagnosed "

with

> Kawasaki by our local hospital. He was very ill for several months

> from Oct-Dec. with rashes, fever, pain, etc. He was on

Methotrexate,

> cyclosporine iv weekly, prednisone, Naporsyn, Zantac...He then

went

> off the iv infusions and weaned off the prednisone. We took him

off

> the Methotrexate early in this year and had been doing well. He

was

> given the 50/50 outlook. (50% of the time they don't have

reoccurence

> and 50% go on to have problems.)

> He in just the past week had a horrible stomach bug that made

> him pretty sick so we halted meds till the symptoms faded. In 3

days

> we started med.s again-Naprosyn and zantac. He had started

becoming

> whiny and crying more. We chalked it up to the bug...he was still

> carring around his bucket for getting sick. Now I'm not so

sure...one

> week later and he had some small rashy patches on his stomach-

faint

> but there...and said his back hurt more than just once. The past

few

> nights he hasn't slept well and has been more whiny and clingy.

Last

> night he awoke and cried for me. When I got him he said his leg

hurt

> and he was holding his hip area. He later was saying his back

again

> hurt...

> Does anyone else in the group have a little one that has

this.

> How do you converse with finding out if they're in pain. I'm not

sure

> Nate has been totally with out it for long. My husband and I try

not

> to ask him to much or give him favors when he tells us it hurts.

But

> it seems hard to tell what is being two... and what is real pain.

We

> go to the rheumy on Wed. next week. I'm not sure he can make it

till

> than.Or that mommy can.

> What are some of the signs the jra is flaring...Nate was so

sick

> the first time that it was obvious...Right now he has no fever or

> redness, swelling or warmth-but does the pain come first...? Any

> ideas?

> My last question would be does anyone else in the group see the

> Riley rheumies in Indianapolis?

[Guest guest]

I take it you have 5 boys??? Wow that's a huge challenge unto

itself. And now one of them has been ill for a while. I'm so sorry

and welcome to the list-serv to talk. It is so difficult to get the

info. that you need to tell the doctor from a 2 year old. This is

big challenge. There others on the list here that have children

with JRA that are that young and I'm sure will chime in over time.

Ours stared when he was 3.

The reason I am responding, other than to welcome you, is to ask why

he was taken off methotrexate? In most rheumy " circles " , you want

to see a child doing excellent, without flares, for at least a year

or so before even beginning to taper any of the meds that are

working well. Did he have a bad experience with mtx. and that is

why he stopped it? Very curious. Let us know more and I hope " we "

can help you.

Stacia and Hunter 8 systemic, iritis

[Guest guest]

Hi Beverly and welcome to the group. My name is Donna and I am A JRA vet of

35 years now. This site is wonderful and full of compassionate individuals who

are here for you. The knowledge is endless and the concern enormous. Welcome

and enjoy!

Donna

[Guest guest]

Welcome to the list. I don't use a cordless phone anymore. The

radiation from the cordless phone itself gives me a headache. I

recommend getting an RF meter like the HF-Detektor II PROFI or some

sensitive RF meter. Check to see if your base is pumping out radiation

even when you are not talking on the phone. My inlaws have a cordless

phone base station that pumps out radiation higher than a cell phone!

I have them unplug it and pull the batteries out of it every time I

visit.

On Jan 20, 2005, at 4:14 AM, danceswild wrote:

>

>

>

> Hello everyone, I just joined the group after hearing about it on

> CFSexperimental. Hi Marc, we discussed emfs there many times.

>

> I got a panasonic home phone with a wireless phone, it is new with

> 5.8 ghz. I got it because it has speaker phones on the station and

> hand set so I never have to put my head against it. My question is

> whether the unit has radiation in general or when the hand set is

> away from the base.

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Welcome, . I too had a cordless Panasonic phone. I decommissioned

it as soon as we realized my husband was ES. An engineer friend

recommended doing this, but the truth is I could *feel* the radiation

in my head every time I used the phone (and I am not particularly

electrically sensitive). FYI, even my husband's telephone headset

seems to trigger ES symptoms if used for an extended time. An old-

fashioned corded phone, as low-tech as possible, seems preferable.

For ES purposes, my rule of thumb is that wired is better than

wireless. I am now in the process of weaning myself off my wireless,

high-speed Internet connection. (Not easy.)

Cara

> I got a panasonic home phone with a wireless phone, it is new with

> 5.8 ghz. I got it because it has speaker phones on the station and

> hand set so I never have to put my head against it. My question is

> whether the unit has radiation in general or when the hand set is

> away from the base.

>

>

[Guest guest]

Thanks and Cara,

I only use the speaker phone. I know the phone is terrible up close

as measured by the trifield meter. You mean you can't be anywhere in

the house with it on? Will the meter measure waves at a distance. Are

wireless cafes like this?

>

> >

> >

> >

> > Hello everyone, I just joined the group after hearing about it on

> > CFSexperimental. Hi Marc, we discussed emfs there many times.

> >

> > I got a panasonic home phone with a wireless phone, it is new with

> > 5.8 ghz. I got it because it has speaker phones on the station and

> > hand set so I never have to put my head against it. My question is

> > whether the unit has radiation in general or when the hand set is

> > away from the base.

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

The radiation diminishes with distance of course and depending upon

your sensitivity, yes, you are getting it throughout your house. How

much radiation you want is up to you. And yes, hotels, cafes, airports

that are wired for wireless all have microwave radiation blanketing the

area.

You will have to figure out what you can handle. I don't even use my

meter any more. The symptoms are predictable and in the same places on

my body.

good luck,

On Jan 20, 2005, at 1:57 PM, danceswild wrote:

>

>

> Thanks and Cara,

>

> I only use the speaker phone. I know the phone is terrible up close

> as measured by the trifield meter. You mean you can't be anywhere in

> the house with it on? Will the meter measure waves at a distance. Are

> wireless cafes like this?

>

>

>

>

>

>>

>>>

>>>

>>>

>>> Hello everyone, I just joined the group after hearing about it on

>>> CFSexperimental. Hi Marc, we discussed emfs there many times.

>>>

>>> I got a panasonic home phone with a wireless phone, it is new with

>>> 5.8 ghz. I got it because it has speaker phones on the station and

>>> hand set so I never have to put my head against it. My question is

>>> whether the unit has radiation in general or when the hand set is

>>> away from the base.

>>>

>>>

>>>

>>>

>>>

>>>

>>>

>>>

>>>

>>>

>>>

>>>

>>>