Re: (unknown)

April 24, 2000

Hi Cari.... gosh it's really great hearing from you. And I'm soooo

happy that is doing so well. Now, if we can just get our to

get better and be able to go home.... I know that Joy really needs a

break.

Anyway, about the group and Onelist.com

I know that if you put it in like Ourmyositis.... it won't work. You

have to use OurMyositis..... the capital M makes the difference. Of

course now that they have merged ... who knows for sure....

Cari, what is IGG shot? I've never heard of it before... Hope you and

your family had a great Easter.

Hugs to all of you today..

Vicki

April 24, 2000

hi my name Adannia and i am 17 and i was diagnose with DM in 1998 and to tell

the truth it was a terrible journey it hard and very long still now im

putting up with, because of the simple fact that prednisone has cause me so

many side effects and by telling you this i dont want you or your son to be

scared just worried abotu the situaiton now and then later we will see what

happens, just put all your faith in the lord up in heaven he could really do

anything. i hope this does not discourge you at all, and if it does i sure

did not meant it the way.

take care

Adannia ( luna)

April 24, 2000

> I was so interested in reading your message. My 4 year old

> daughter has just been diagnosed with JDMS. We just finished her

> first IV Solu-Medrol last Friday (3 days). She will do 3 days again

> this week and next. She is on 5mg of prednisone in between. I

> haven't noticed many changes yet.

Our had six months of Solu-Medrol therapy last year. It worked

wonders for her, and she had essentially no side effects from the

infusions. At first, they will monitor her lab results closely - they

will be looking for a strong improvement within a few weeks. The

clinical improvements will take longer - it usually takes several weeks

or months before strength and endurance return, but sometimes it

happens much quicker.

> Caroline is a patient at Texas

> ish Rite Hospital. Do you have any tips for us as we begin this

> journey? I have to admit I am a little overwhelmed by the whole

> experience that I hardly have any questions yet. What kind of

> treatment did they start with when he was first diagnosed?

> Thanks for your help! It helps knowing there are other parents and

> children going through this. Thanks again, L.

I don't know if you've seen my JDMS Diary yet, but you may find it

helpful. It's a lot to read all at once, but take your time, there's a

lot of good stuff in there, so people tell me.

http://www.ralphb.net/JDMS/

For a start, check out my recent interview about JDMS, which

specifically includes some advice I have for others in the same

situation:

http://www.sevenquestions.com/new7q/ralphbecker.htm

Good luck to you at this trying time. If you do think of questions,

we're here to try to answer them for you.

Ralph

==========================================================

Ralph Becker http://www.ralphb.net/

Will Juggle for Food. RKBA!

April 24, 2000

Hi ,

Another option you might want to research is one that was pioneered by a Dr.

McPherson Brown, over 50 years ago. His ideas were not widely

accepted at the time, but he continued to treat patients according to what

he believed, and his patients got better. What he believed is that these

diseases are caused by an infection, most probably a mycoplasma. Finally,

with the help of modern laboratories, more people (including doctors) are

indeed finding out that Dr. Brown was right. There is lots of info at the

following sites: www.rheumatic.org and www.roadback.org

I would also recommend that you read The New Arthritis Breakthrough by Henry

Scammell.

I have been on this treatment for two years, and I am doing very well. Let

me know if you would like any more information. I would be happy to share

with you.

take care and welcome!

Connie Hache

April 24, 2000

Hi Luna

I also take the Prednisone and have been able to decrease down to 3 mg a

day. I've had the side effects with this drug. What side effects are

you having? Hope your feeling better.

Vicki

April 25, 2000

Hey Vicki!

Down to 3mg of pred?....way to go gal......I

can;t seem to get lower than 5......

Luna

Myside effects inclued oestioporosis .....I lost

3 " which I couldn't afford (4'10 " at my tallest)

cataract surgery on both eyes.....high cholestrol

........bad teeth and lots of borderline stuff...

In all fairness I must say that I am being

successfully treated for oestioporosis (Fosamax)

and the high cholestrol (Lipator) and that

without the predisone I wouldn't be able to

function on my own now.........It's a love/hate

relationship.....lol

Teddi

April 25, 2000

Hi Teddi... well, we'll see how long it lasts. Since I have such a

terrible time with prednisone... weight gain, osteoporosis, swelling of

internal orgins, headaches, swelling of the throat, and Prednisone

myositis.... the doctors feel that, no matter what, it might be to my

best interest to get off the drug altogether. Now, we don't know how

long that will last. I did have to start my shots of Enbrel on Saturday

because I have no energy at all and that makes it hard for me to

breath....My lung specialist has told me she would much rather have me

get off the Prednisone and she can perscribe a cortical inhaler just for

my lungs if I start to have problems breathing. She's also concerend

about the drug going through my body. Like I said....we will see how it

goes.

I'm so glad to hear your doing better Teddi just take your time and get

rested up.

Joy, that is the greatest news yet. I go see my doctor on Friday so

I'll be mailing a card to then. Lots of hugs to all of you.

Vicki

April 25, 2000

Vicki wrote

<<Teddi just take your time and get

rested up.>>

Yeah, right! I ordered a new computer table last

week........gave myself a week to clear a place

for it......naturally the spot I wanted to put it was

4 " too short!.......I move something 6 " and set

down to rest, etc......and Thurs is getting REAL

close......lol

Teddi

April 25, 2000

Teddi, are you getting a computer? OMG, I'm going to be the only one on

Webtv before to long. Need a couple of other things like a digital

camera for my daughter first.... you know how that is.

Vicki

April 25, 2000

Vicki

Yeah, am seriously considering a computer

......for one thing I'm getting tired of clicking

on a URL that starts http and have Webtv

can't go there because it has to start http

AGHHHHHHH

Besides I want to be able to scan my jewelry

and get it out so people can see it.......Now

all I need is some $$$$ to back up my " wants "

Teddi

May 7, 2000

Hi Cari,

Dr. Franco, of Riverside, California initially did a blood test on me

that looked for past infection of Fifth's disease (also known as the

sakie virus.) He told me that there is speculation that one of the

causes of DM is a prior infection of Fifth's. Sort of wierd, huh? It looks

like your got the cart before the horse.....the DM before the Fifth's

disease. I do know that Fifth's disease is quite common in children,

though.....and of course we know that DM isn't real common.

Also, since you have to change doctors anyway, if you are interested in

looking for a doctor who is interested in complimentary therapies regarding

these diseases, I might be able to help you. Through another support group,

there is a list of doctors from across the country (and elsewhere) who are

using not only standard therapies, but also additional therapies. This list

includes many knowledgable doctors, including Dr. Trentham, from Beth

Israel Hospital, a partner of Harvard Medical School.

Let me know if you are interested in the list. I am very happy that

is doing well, for the most part. That makes all the difference!

take care and hugs, too,

Connie Hache

(unknown)

> Good Morning to all,

> A big welcome to our newest members Catzmeow,(love

> that name) and yorkiland. My name is Cari and my 4

> year old son, , has juvenile Dermatomyositis.

> His CPK is in the normal range and he is doing quite

> well at this time.

> , So happy you have found a great doctor. He

> sounds like he is very open minded to different

> alternatives. That is wonderful and so rare. I

> understand what you mean about the office staff. The

> office staff at my children's pediatrician's office

> act like they are granting you a great privilege just

> by setting an appointment. The last time I was in,

> the nurse told me she was too busy to call the

> prescription in so it would be ready when I got to the

> drug store. It was 7:30 at night and the kids hadn't

> eaten dinner yet. We didn't get home until 8:30 and

> it was a school night. I was furious. A few days

> later I got a letter in the mail from them and they

> are dropping our Blue Cross/Blue Shield plan. Now I

> have to find a new pediatrician that is familiar with

> DM. Ugh. I hate that has to get used to

> someone else. My 8 year old daughter Shelby dx with

> strep yesterday so had to be seen also. They

> put him on antibiotics because he had a yucky nose and

> also dx him with " fifth's disease " . The biggest

> symptom is a lacy rash on his face and truck. With

> , who knew? Lacy rash, red face, welcome to our

> world.

> Vicki, loved the Wal-Mart story! I hate to ask, but

> what is ISP? Happy Sunday to all!

> Cari and

>

> __________________________________________________

>

May 7, 2000

Hello everyone...

Cari... changing doctors might be a blessing for you. All of us have

gotten so use to putting up with doctors who don't care, nurses with

personalities of a spider, uncaring office workers. I put up with that

for years thinking it was that way with all health care providers. Not

so... the clinic where I go now is so nice. The nurses are wonderful

and have great personalities. If I call for a refill or want to talk to

the doctor they make sure it gets done.

After I told my doctor what I had put up with for years he gave me a

good bit of information.

He said no one should be treated like that... he said start complaining

and changes will be made. If the gal who gets you another appointment

is rude, tell her so. Once people stop taking this, thinking that we

have no other choice, then things will change. We have to remember.....

it is US or family members who are sick...not THEM. So don't let them

push you around. It takes so little to be nice and it takes more effort

to be nasty.

The first time I went to my new dentist office I was confronted by a

very young gal who didn't smile at all much less answer my questions.

She was very rude and acted like I was bothering her just in making

another appointment. I remembered what my doctor had told me so I

politely asked the girl if we had met before....she said no with her

little attitude. Then I asked her if I had offended her in any

way....again she said no... I then asked her " Then why are you treating

me like I shouldn't be bothering you, I just want to make another

appointment " .... she was floored... she didn't know how to respond. I

also told her I would not tolerate this kind of treatment. My next

visit, she was pleasant and I did ask how her day was going. We started

a conversation... I couldn't believe it. But I do know it works. No one

should have to feel like these people are doing us a big

favor...especially in the health care profession. So Cari, I know it

will be a pain but you just might find someone much better....also,

contact the MAA for a doctor in your area.... I think if you go to there

web site you can just put in your zip code and it will take you to the

nearest office....or is that the MDA...either one will be able to help

you. Happy hunting and I hope everyone has a wonderful weekend.

Oh by the way Cari.... I am going to try the hammock... LOL.... oh

Wal-mart is going to love me if I get stuck in that.

ISP is Internet Service Provider.... I know you had trouble on your last

addy, so I wondered if it was your ISP that was a problem for you.

May 7, 2000

I'm sorry everyone for sending this out again but I hadn't removed my

html coding for Catz when I first sent this out. This is for you

Catz....

Hello everyone...

Cari... changing doctors might be a blessing for you. All of us have

gotten so use to putting up with doctors who don't care, nurses with

personalities of a spider, uncaring office workers. I put up with that

for years thinking it was that way with all health care providers. Not

so... the clinic where I go now is so nice. The nurses are wonderful and

have great personalities. If I call for a refill or want to talk to the

doctor they make sure it gets done.

After I told my doctor what I had put up with for years he gave me a

good bit of information.

He said no one should be treated like that... he said start complaining

and changes will be made. If the gal who gets you another appointment is

rude, tell her so. Once people stop taking this, thinking that we have

no other choice, then things will change. We have to remember..... it is

US or family members who are sick...not THEM. So don't let them push you

around. It takes so little to be nice and it takes more effort to be

nasty.